Highs and lows

I miss my SJMP. I miss hearing the highs and lows of my friends. I miss hearing laughter from new moms and I miss sharing in their tears… Here’s to you ladies.

My high today is – We’re in Texas.   IMG_6815

My low today is- We’re in Texas.

IMG_7368We moved to McKinney, TX on April 3rd. We transferred the kids to their new school at the end of the school year. Even just 6 months ago, I can’t believe my anxiety levels didn’t cause me long term damage.  Well, the jury is still out, I guess :) The transition has certainly had plenty of highs and lows but for the most part, it has been OK.  We’ve already made some really great friends here and we have put on a light sweatshirt maybe once since April. It’s outstanding!

However, I miss my AH Patton peeps, my Ridge Ave family, my SJ community, my parents and my sisters…the raw pain is subsiding, but the lingering ache is still there everyday.

One of the reasons, we chose Dallas was because of the outstanding medical facilities here. We have already found a wonderfully compassionate cardiologist, a tolerable neurologist, we will be seeing the Gi team soon and a team of therapists for Gabi.  The school has embraced her needs and is working with us to get all the services she needs.

And coming to Dallas includes an all inclusive resort and spa for 30 days and 30 nights! Pretty sweet, right?  Oh wait, no I meant an all inclusive feeding clinic for 30 days and 30 nights.  They’re easily confused.

October 20th is the day. Gabi will be admitted into Our Children’s House at Baylor’s inpatient feeding program for 30 days.  It will be intense. It will be exhausting. There will be lots of tears (from me and from Gabi). I am afraid to pray for any specific results because I am trusting that God will be there for Gabi.  She is going to have to work really hard.  And I am trusting that God knows that this is our 4th feeding clinic and I feel like it’s our last hope.  It’s not, of course, but we have exhausted all outpatient program’s efforts.

I am heartbroken that I have to leave my 4 other babies for 30 days. My heart is breaking.  They are still adjusting here. We are all still finding our way. 6th grade homework is getting intense. T’s anxiety is creeping up, M is finding out which friends she can trust, and Max just needs me to help him go potty.  I will miss them so much.

IMG_654130 days.

I can do this.  

Gabi can do this.

My kids can do this.

Ethan can do this.

And maybe, just maybe… we won’t be using the G-tube when is done

Love you all, Teri IMG_5588

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Our first day in McKinney

Our first day in McKinney

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5 more weeks!

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Chicago has it’s first snow today so I thought I should give an update here,

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We are settled into our new home, although it still feels like we just threw our stuff down and where ever the furniture landed is where it’s staying and for the most part, I’m OK with that. Living next to our church has brought us physically closer to our worship space and the people we worship with, and the proximity has brought us even closer to our faith. We left the comfort of our neighbors, we left the comfort of having a long term plan but hearing those church bells ringing every hour truly reminds me that everything is going to be OK.  It’s been sad, traumatic but also a true blessing!

 

 

 

 

We survived Halloween! Ethan jr. went trick or treating with his friends for the first time. It was big moment for them and they did great! If you don’t know my feelings towards this “holiday”, please read last years post

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Since our cats are being boarded ay my mother’s house, we invested our emotions, time and money into a few new pets. Guinea pigs!!  We have been adopted families of 3 adorable guinea pigs and we have 1 survivor.  Trixie is our survivor. Charlie and Daisy have passed on to Guinea Pig Heaven. It’s been good life lessons for the kids here as far as grief and loss.

We finally got in to the Lurie Children’s Hospital Feeing Clinic.  We had our initial appt and my excitement was temporarily crushed but by God’s wonderful grace, Gabi is now eating up to 18 bites per meal!! All 7 or so clinicians evaluated Gabi and asked me lots of questions for over an hour and then they excused themselves to discuss the best plan for my dear Gabi.

We had:

  • a psychologist
  • 2 nurses
  • 2 Feeding/speech specialist
  • GI doctor
  • Dietician

They all came back and my excitement wasn’t hard to hide.  Dr. Fishbein sat down and sighed.  I know when the doctor sighs, there is a gut punch coming soon.  I closed my eyes and said 2 quick prayers. One prayer was for strength to keep the tears at bay and for wisdom to speak clearly to this team of medical professionals. The second was for my sweet Gabi.  A prayer for help. Please be with her.

Following the despairing exhale, Dr. Fishbein explained to me what an outpatient program is.  Did I look new to this?  He then explained to me that we have no starting point with Gabi. They couldn’t find a place to begin the feeding clinic for her. He went on to ask me if I was willing to travel. That is never a good question in medical explanations.  He explained that an inpatient program would be best for her. I quickly thought to myself… OK, how bad can this be? Travel to where? Ohio, MI, WI? As long as we could drive… But would we have to fly?How much our airplane tickets? How could we possibly afford this? Slow down, slow down…

Dr. Fishbein said there are 2 wonderful clinics. One in Indiana, one in Maryland.  Indiana, I thought?  Awesome, we can do this.  Evansville, IN.  6 hours drive. Oh.

“How long would this be?” I asked him, thinking and hoping he was going to say 1-2 weeks.

6-8 weeks.

I couldn’t possibly. The other kids? School? Max?  How could we possibly do this?

photoI took a deep breath and again prayed for strength.  OK.  ”Are there any other options?” I asked. Before he got a chance to answer, I was blessed with wisdom as I rephrased my question. “Would it be possible for us to try the outpatient program here and FIND a starting point for her?”

“Well, the swallow study was years ago and I don’t trust those results.  We don’t know what is physiologically going on with her. I don’t want to make guesses.” He said.

The wisdom poured out of my mouth. I don’t really remember what I said but I did convince them to take her as a new feeding clinic patient.  I eloquently spoke … without any tears!!….and said something like this- Gabi has endured every negative outcome that was possible but she has fought and she has defeated all odds.  Please just give her a chance.

They did. And we have been there for 5 weeks! They agreed to reassess her standing after 5 weeks and they have given her another 5 weeks!  Molly, our SLP, is thrilled with her progress! She has a long way to go but we have proven to this team that Gabi will prevail!

We work hard… and the inpatient program is not off the table but right now, we are getting the help she needs. We have appts made until Dec. 18th.  The team keeps saying that we will hit a wall soon and will need further help and guidance.  I am open to whatever Gabi needs.  But right now, she is kicking some butt!

Her endurance is still a weakness. She can’t make it up more than 4 or 5 stairs before needing assistance and she still needs help when walking a long distance.  Dr. Cava doesn’t really have an explanation for this. Her peers with the same heart condition are running and riding bikes. Her sats are still between 87-94, which is great for her.  She continues on her 5 meds and even though Walgreens is a pain in my butt, all the meds are staying the same for a while.  She is still 95% G tube fed but Molly even mentioned that our next appt, we can discuss cutting down on some of the formula to try and get her “hungrier”!!

 

In September, we had 2 birthdays, in October, we had 1 birthday.  IMG_6677 IMG_0072 IMG_6815

In November, our beloved Connor was ordained a Deacon within the Archdiocese of Chicago. In May, he will be ordained a priest. We are so happy for him and so very proud of him! The picture below is Connor with his 11 classmates that were also ordained and the dude in the middle is Cardinal George! And the guys on the right hand side, are several of the bishops in Chicago.

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We have had football championship games and we played hooky one day to go to the zoo. There was a baby snow leopard with its mother and its mother was on high alert staring us down.  We got so close. It was awesome!

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Thanks for reading.

Much love  and peace,

Teri

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It’s all Praise!

DSC_0028We have a plan!  And God is chuckling.

We got approval for “the church house!!” I want to write a deep, thought provoking post here but I am up to my neck in boxes, so I will write all the details after we move this Friday, August 2nd.

These are the wonderful things that have happened to us in the past few days.

1. We planned a trip to Great America because the kids get their free tickets from the reading program.  We planned the day only to have Ethan sr. call me 2 days before from work and tell me that he had to go into work that day.  They scheduled a meeting for that day and he had to be there. I was mad. angry. pissed. I felt like he was choosing work over his family which I know he sometimes has too. I shook it off and made a back up plan. The day we were supposed to go, Marissa woke up in pain and sick. Our backup plan was to head to the zoo with my sister and niece so before we were to leave, I raced over a urine sample to the pediatrician and we tried to go to the zoo… Marissa’s FAVORITE place!  She was too uncomfortable and we had to head home after only an hour.  (We did get to see the Dolphin Show- although she cried through half of it). We got results of a bladder infection and started an antibiotic. Our trip to Six Flags would have been ruined.  God works in very funny ways.

2. We also started my second oldest son (almost 8) on a new medication this week and it is a miracle for him. I cried tears of joy for him as he is so happy and calm and not down on himself anymore.  Ethan Sr and I had talked about starting treatment for a while now and I have been praying and felt the Holy Spirit telling me to help my son.  We did and it is truly miraculous…. I know it’s going to be a constant rollercoaster but I am just so happy for him right now.

3. We got approval on a house!!!  WE HAVE A PLACE TO LIVE!  We will be renting a home from our parish, St James.  They own a few houses and we were able to push them along to be approved.  I will post the entire story of how God worked in this story later.DSC_0062

4. I called the new feeding clinic to check on Gabi’s status.  They had “never received” her records so I made a few phone calls, got a few apologies and we have an appt set for August 8th!  I am thrilled to get her started…

5. Gabi went pee pee on the potty!!

6. I got a phone call from one of my favorite organizations called Dynamic Catholic started by Matthew Kelly. We have made donations in the past and I frequently order books from their organization. She was calling to see if we could possibly make another donation at this time.  I told her that we were really in a tough spot right now and just couldn’t. I felt terrible.  We chatted a few minutes and not surprisingly I started crying when she asked about Gabi. She personally added Gabi and our entire family to their prayer list.  I was so touched by that phone call.

7. Did I mention we are approved for a house?!

Thank you thank you for all of the prayers and support. A special thank you to my  awesome sisters, Heather and Steve, Steve and Steph, Mark and Karie, Sue, and my mom.  

I almost forgot to say thank you to the St. Brendan’s Men’s Group in FL for all their prayers for Gabi.
The kindness and support means more than you’ll ever know.

My sweet friend, Nicole, that I finally got to see after many years

My sweet friend, Nicole, that I finally got to see after many years

My handsome 2 oldest boys

My handsome 2 oldest boys

So much love and praise,
Teri

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21 days

Words are not coming to me very easily right now.  I wanted to post about this so I don’t ever forget where we have come from and how strong our family is.  I want to remember these days vividly so I can count my blessings over and over when we are out of this situation.

DSC_0071We have 3 weeks (21 days) to move and have no where to go.  We have a few places but all of them have a few obstacles we need to overcome first… one isn’t available until Aug 15th, one doesn’t allow pets, and one is owned by a shady, incompetent company that won’t return our phone calls.  There isn’t much else on the rental market that can home 7 people that is within our price range.  We get so close and then the rug gets yanked out from underneath us.  My kids are stressed, my husband is exhausted and I am trying not to cry in front of them all.   I am angry.  I am really angry.

Do we create this drama?  Do we not work hard enough?  Why is this happening?

I know.. for a fact… that this will work out.  Something will work out because it has to.   I still have faith that God has a plan but I am upset and angry right now that I don’t know that plan. I am angry that others are able to enjoy their summer and we are hanging on by a thread.

And the new feeding clinic will not call me. I have called and called to get Gabi scheduled for an evaluation but they haven’t reviewed her files yet. They are supposed to call me… I need something to move forward…

It’s a tough day.

Happy 4th of July!

Happy 4th of July!

Much love,
Teri

 

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Impossible is not a word

I got to attend Saturday’s 5:00 mass with only child next to me.  I love being surrounded by my children (even when they hang on me ) at church. Church is an intimate hour with God and who better to spend that intimate moment than my family.  However, when I’m actually able to sit quietly and LISTEN, it is awesome.

I wish I was better at listening to God but I think he brought me some peace.

IMG_6214After apologizing…pleading… making offers to the owner of the house, Saturday morning we received official word via certified letter that we, indeed, have to vacate this house by August 1st.  Our home for 4 years.

32 days we have to find a home and move our 5 children.  I don’t understand how a person, a man and his wife, could do this?  We made a mistake, yes. We shouldn’t have removed the bushes without his consent.  But is this reason to evict a family within a month?

We were/are angry. Sad. Confused.  My kids saw me upset and asked questions.  The neighbor kids saw me cry.

Here we are. scrambling.  We had plans this summer. Gabi had no scheduled procedures. We were focused on her feeding clinic getting started, actually considering taking a short vacation. And laughing, a lot. I was grieving my summer.

BUT

Then I went to mass.   Fr. Bill said we have to remember to always.. WALK IN FAITH, LIVE IN HOPE, and ACT IN LOVE.

WALK IN FAITH: Live our catholic faith boldly. Find a friend that will encourage you to live against the grain, against the media, and be proud to  accept the eucharist every week.

LIVE IN HOPE:  Trust in God… always.

ACT IN LOVE: forgive, and always be a joyous Christian.  I have heard criticisms that the Catholic mass is so boring.  There is NOTHING boring about the mass.  The mass is joyous and our lives our joyous and we need to find that smile… always.

So, I came home, gushing with love watching my son serve mass and sitting my with daughter and listening to our pastor with renewed spirit.IMG_6253

Impossible is not a word. We can do this. This is happening for a reason and we might never understand.

Buy or rent?  So many benefits and drawbacks of each.  I was hoping we could scrape together finances and be able to put a home purchase together. However, I think renting is again in our close future.

Side note: I was SO excited to be able to officially put down roots and live under our own rules. This is so hard for me. It is difficult for me to admit that we rent; I feel like I always have something to justify. I was really excited to fit in and control our home decisions.

Our children know something is going on. We plan to have a family meeting today. They keep asking if we are moving and plead with us not to.  It’s tearing my heart apart.

We aren’t moving far, so it’s going to be fine. But, it’s a forced change and it’s uneasy for everyone.

I am keeping Fr. Bill’s words close to my heart and remember to live them.  SO, a smile will be on my face and we will focus on the excitement of moving. Hey- maybe we’ll have a basement or more space! We have to focus on the silver lining…Good thing God always provides perspective.

We so appreciate all the thoughts and prayers. I’ll keep you all posted. Thanks for reading.

BTW- Gabi is doing really great. Still little progress with eating or potty training but all in good God’s time. Her records finally got transferred to the new feeding clinic, so we are awaiting for review of those and then an evaluation appt.

Much love,

Teri

BLACKHAWKS WIN!!

BLACKHAWKS WIN!!

 

 

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Gabi’s birthday and prayers needed

I am behind. Way behind.  But I’m ok with it.

Happy 4th Birthday sweet Gabi!

Happy 4th Birthday sweet Gabi!

Gabi celebrated her 4th birthday on June 9th and on June 15th, we celebrated with her  friends and a few of our neighbors.  It was a great celebration that also kicked off our block party.  4 years ago, on June 15th, was the day of her first surgery. She was 6 days old.

She is doing well.  We are at a maintenance stand still.  I am waiting for her records to be transferred from the GI dept in Milwaukee to a feeding clinic out of Central Dupage hospital. Nothing has changed. She still throws up at least 3 times a week but is maintaining hydration and her weight. So all is good.

Many of you know how much we love our neighborhood. They have been a lifeline for us.  We need payers that we can stay here.  We rent this house.  Yes, it’s a small small house for all 7 of us, but it works, for now.  A few weeks ago, we made some improvements on the house (taking out some incredibly horrendous bushes that lined the front sidewalk).  The new front yard is beautiful!  Shaggy and needs some weeding, but it’s clear and the new grass is growing!

The owner of the house stopped by last week and isn’t too thrilled with our improvement.  He kicked us out of the house giving us until August 1st.  He was furious. Livid. We felt terrible.

Our previous financial report is very depressing.  But Ethan has a GREAT job and we were finally able to catch up on medical bills and actually start saving money. We were on our way to our second homeownership with a savings cushion. Our goal was to call a realtor next Spring. We even had a financial counseling appt on Thursday to go over our 401k’s and start a  forced down payment savings account!!

After our landlord left us in shock. I immediately thought of the quote “If you want to make God laugh, tell Him your plans.”

S0, with nothing in the bank, bills piled up, we are once again walking off a cliff trusting that God will provide us a parachute or at least have a trampoline when we land. We won’t move far but I don’t know what’s going to happen in the next 3 weeks of our life and I will terribly miss seeing our friends everyday.

For I know the plans I have for you, declares the Lord, plans for welfare and not for evil, to give you a future and a hope ~Jeremiah 29:11

Pictures from Gabi’s birthday. Little did we know, it may have been our going away party too.

Gabi and her heart friend, Caden. LOVE!

Gabi and her heart friend, Caden. LOVE!

Our amazing neighbor, Stephanie... Gabi's favorite person in the whole world!

Our amazing neighbor, Stephanie… Gabi’s favorite person in the whole world!

My beloved friends across the street, Karie and her beautiful daughter, Emily.

My beloved friends across the street, Karie and her beautiful daughter, Emily.

My Ethan and Mark, who belongs to Karie :)

My Ethan and Mark, who belongs to Karie :)

 

My oldest handsome boy

My oldest handsome boy

 

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With her new favorite teddy bear

With her new favorite teddy bear

Not a block party until someone pees on the tree!

Not a block party until someone pees on the tree!

Balloon launcher!!

Balloon launcher!!

 

Loving her Dora cake

Loving her Dora cake

Thanks for reading. Prayers for all of you out there with life going on….

Love,
Teri

 

 

 

 

 

 

 

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Tried and Tested

Hello faith.  Are you there today?

I’m running on empty.  Cub Scouts, baseball, end of school picnics, graduation parties, teacher presents, keeping up with friends that need just that… a friend, rushing home for the toddler’s nap, signing up for summer actives, facing summer activities, planning a reading/chore schedule for the summer, girl scouts meetings, block party planning, ortho appts, alter server schedules,trying to find carpools… phew.

These are all things I tremendously enjoy. It’s when there’s a feeding pump thrown into the mix and remembering to carry the vomit bucket with us in the car, or it’s comforting my child’s social phobias and trying to quiet his anxiety, it’s trying not to snap at my son’s lack of remembering his brain.  It’s the last day of school today and I am running on fumes.

I had the absolute pleasure of seeing my friends from our old house in Oswego this past weekend. Three families with 21 kids between them (5 adopted from Ethiopia). When I say amazing people… I truly mean it. They are my inspiration.

After talking with them for only a few minutes, their words wrapped me up in a warm hug filled with God’s grace. They have many issues with their kids, like we all do.  Each one takes a turn of the one that you worry about.  Whether it’s the teenage girl that was left out of her group of friends and has withdrawn from the family, or the autistic Kindergartner that needed to go away for a few days of intense behavior treatment, or the grade schooler that has symptoms of ADD and you don’t know whether to act on them, or the child that scores so low on testing that the school district is failing you and your options look bleak, or maybe it’s the siblings that lost their baby sister and will never feel complete, or the teenage daughter that has cardio myopathy and insists on running track.

We are all happy, filled with so many blessings, yet we are all so lonely. It’s not that any of us would change our children, of course not, but why God would entrust me with them completely bewilders me.  I feel inadequate most of the time. We are all on our own on this crazy journey called parenting. The moment to moment decisions will make or break your child.  There is no manual, there are no guidelines.  And to make parenting more stressful, the married couple disagrees on how to discipline or what to take seriously.

Gabi was so tired yesterday morning and was coughing a lot- like a nasty croupy cough.  Sure enough, I had to pull over and let her puke in the acclaimed tupperware bowl that was ready at the waiting.  The tears burned as I drove her to school and thought how exhausted I was taking care of her.   I thought of my friend caring for her autistic daughter along with her other 6 children and felt her strength wrap me up again.  I texted my husband (when I stopped the car :) ) that it was a difficult morning.  I’m so tired.  I put my sunglasses on so that no one could see my tears.

Gabi cried as I took her out of the car and I instantly knew, she couldn’t go to school. I told the teacher that I would just take her home.  So lonely.  As I caught the puke moments before, I thought, is she just tired? is she getting sick? Are we headed to the hospital?

I grieve who she is not- but try to not let that overwhelm me. But sometimes I think I am more resentful than I want to admit.  A healthy four year old would be running and riding a bike and be potty trained and EATING.  Gabi does none of those things.  We are stuck in toddlerhood. Resentful towards whom… I resent the people that should be supportive but aren’t. I resent people that pretend to not be lonely. I resent those that have an easy life. I resent those that can afford to hire help. I resent those that are able to volunteer at  their kids’ school. I pray for God to take the resentment and anger from me because it’s not fair to those individuals then I drink a cold beer.

But what am I going to do?  Sit here and be miserable? Of course not.  Like I have told myself  a million times, happiness is a choice. I pray continuously for God to help me because I can’t do it on my own and I can’t rely on others to rescue me just as I can’t rescue my friends.

Just to cheer myself up a bit, I made a list of things I am grateful for:

1. My husband- although I feel like sometimes we live separate lives, he works so hard for us.

2. A smile from my son after he pitched a good inning. He needed that.  Even though I couldn’t be there, my husband assured me, he got a smile.

3. My book club- I have read some amazing books and I am getting to know a new group of friends

4. My sisters

5. Sunshine

6. My shop vac- it cleans everything!

7. My  jogging stroller

8. K-Love

9. Pandora

10. This note from my daughter, Marissa. (She still thinks I’m nice :) )

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BTW- Gabi is fine.  She was just really tired. She is still coughing a lot.  Stayed tuned for my daring plan for Gabi that is against doctors orders…. Happy Happy Summer!!

Love,

Teri

Last Day of school!!

Last Day of school!!

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Groovy once again

As of today, May 29th, Gabi weighs 31 lbs.  I am so happy with this weight!  She has kind of leveled off and I think we have found our new, temporary groove.

She is taking in 2.75 cans of Pediasure 1.5 and 610 ml of water.  1270 ml total of liquid. This is 42.3 oz or 5.3 cups of liquid.

Last week, she was throwing up a lot and the dietician and I went through all probable causes.

  1. The consistency- meaning the Pediasure was too thick for her to digest
  2. The volume- the amount of liquid she was taking in at on time
  3. The rate- the speed rate set on the pump. It may have been too fast.
Daddy loving Gabi

Daddy loving Gabi

 

Lauren, the dietician, suggested I start with the rate and cut the speed in half… going from a rate of 235 ml/hour to about 140 ml/ hour. I strongly disagreed with her because she was already on the pump for over 6 hours a day… I was not going to increase that time!!  She can’t move around and play like a normal kid which makes her weaker and her PT obviously wants her moving!

I changed the volume.  It was risky.  I went from 150 ml of Pediasure mixed with 150 ml of water to just 150 ml of Pediasure mixed with only 50 ml of water. It was like a milkshake.  She took to it with no problem!!  I have even been able to bump the rate up to 245 ml an hour on the pump so she can finish her feed in about 45minutes. I do have to give her boluses of water throughout the day via a syringe, but that is fine.  the less time she is on that pump, the better! She hasn’t thrown up once since that change.  Woot woot!

Now that we have this under control and her weight has stabilized, we will continue with this for about a month- but-  I am ready for this girl to eat orally!!

I have been a stickler about her sitting at the table with us every meal and trying to eat something in the past few weeks. She doesn’t like it, but that’s tough.  I’ve been so easy on her just thanking God that she is still here with us.  Now it is time to improve her daily life.

Gabi hanging with her neighborhood friends

Gabi hanging with her neighborhood friends

I am applying to several feeding clinics and the evaluation process is going to be brutal but we’ll get there and the other kids are just going to have to suck it up and come with us to all these appointments. Maybe I can find a friend’s house for them.

I still have glimpses of feeling like a total failure but I am really trying to stop beating myself up.  You want to know what makes me feel bad about myself?  Facebook, Pinterest, mom blogs.  I read other heart mom blogs where they are much more focused on getting their kid to eat.  Their kids are potty trained and far exceeding Gabi at eating and physical abilities. I look back and think, maybe I didn’t try hard enough with her? Maybe I was too lazy?  The excuse of having other kids wears thin real fast for me. I don’t like embracing that as an excuse.

I did read a blog that I think about all the time.  Her post was entitled Drops of Awesomeness.  Basically, we, as moms, beat ourselves up about all the little things.  But when we do act completely selflessly and do something great for our kids… that is a drop of awesomeness that should not be overlooked.

There is a person in my life that is addicted to being miserable.  No matter what good things happen, she always focuses on the negative.  It is a lot easier to be miserable than it is to be happy.  Happiness is truly a choice.  And I pray everyday that God will help me see the positives and choose to be happy.

I love my Gabi

I love my Gabi

 

I also love my Marissa and Thomas

I also love my Marissa and Thomas

 

 

Thank you for any prayers you may have spared for my Gabi. She is once again doing well.  And I know she’s going to make leaps and bounds this summer.

Love, Teri

Ethan's artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

Ethan’s artwork was chosen to be displayed at our local library. It is the bike sketch. so proud of him.

 

 

Gratuitous picture of Marissa ready for her dance recital

Gratuitous picture of Marissa ready for her dance recital

 

Thomas

Thomas

Max and me

Max and m

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Weight Gain.. Is it the Holidays for Gabi?

It is early Saturday morning and the house is so quiet. In a few minutes I have to go to Gabi’s bed and turn off her pump before it starts beeping. This will start the day’s long routine of feedings for her.  We still haven’t found our groove and her quality of life sucks right now.  Cardiology tells me to get her up and moving to get stronger.  GI tells me to keep her still 5 times a day, an hour each time, to feed her via the pump. I feel like I am going crazier!

Last Friday, April 26th, Max had his 18 month (even though he was already 20 months) checkup at the pediatrician and I asked them to please weight Gabi.  She had been looking chubbier and bloated the days prior.  She weighed 30 lbs. 2 oz!!  Let me say, she was 26 lbs. 14 oz on April 18th, the day we started this crazy routine.  4 lbs in 8 days! What the holy heck?  too much.

Immediately I called into Gi and cardiology. Of course, I got a hold of cardiology faster and I was on the phone with the nurse for about 45 minutes. We checked her sats, her respiratory rate, her pulse, I pushed on her belly, we checked her ankles for fluid retention, we checked her shunt and her eyes but everything checked out OK.  Dr. Cava had stopped her last diuretic on April 8th, so they were super concerned of any fluid buildup, but no signs of it. I knew in my gut that it was the food.

GI’s response was to blame the scale.  They told me the scale must be off, and that there is no way she could gain that much weight in so little a time.  I was furious. I explained to them I could feel the weight when I picked her up.  I agreed to give it over the weekend to actually have a true comparison on the same scale. So, she was weighted 30. 2 on Fridy, the 26th. By that Monday, the 29th, she weighed 30 lbs 10 oz.  4 oz of weight gain a day!

Finally, the dietician agreed to take the food down a notch, only removing 2 ounces of Pediasure and the tablespoon of veg oil.  But they were still acting so surprise that she was gaining so much weight.

I agreed to give it a week on this new plan and see what she weighs the following Monday, which will be May 6th.

She has been throwing up and hates going on the pump.  It is awful. I have the pump rate set at 211 during the day and it seems that is the fasted I can push food into her for right now. This means, the pump pushes 211 ml’s of food (a little more than 7 oz) of Pediasure (diluted with water) into her stomach in an hour.  Her total amount of intake needs to be 771 ml’s of Pediasure mixed with 515 ml’s of water.  This equals about 42.8 ounces of liquid or  almost 5.5 cups. She is not tolerating this well. Neither am I.

Please continue to pray for my Gabi.

Love,

Teri.

 

 

 

 

 

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New Feeding Routine

IMG_3347It’s been really… really hard.  We have successfully changed over Gabi’s formula to a new higher calorie, higher fat one called Pediasure 1.5.  I think she has put on weight already, so I know it’s good for her and it’s all going to be worth it.  But getting her off of night time feeds is going to be really difficult.

We are on step 2 of the list.  She is hooked up to a feeding pump 5 times a day for an hour each time. That is almost every other hour. AND I am supposed to try and give her some food for her to try to eat orally BEFORE each pumpIMG_3430 feeding!  If I have to go somewhere, and having 5 kids to tote around, I HAVE to go somewhere… all the time.  We haven’t found our new groove yet and it’s been tough.

The transition to the new food was tough too.  I did some research on how our body responds to higher fatty foods. Basically, because she was on a low fat, low calorie diet for 9 months, her pancreas and gall bladder weren’t doing much work.  Now, all of the sudden, they have been boosted up into turbo speed.  Everything will adjust, in time.  But the past week, she has been crying from discomfort and throwing up a lot… like 3 or 4 times a day. ANd of course, Big Ethan has been out of town. The GI nurse told me to stick it out and sure enough, things are getting better.  But we are not at her full feeds yet.

IMG_3429When she is hooked up to her pump, she is confined to a chair or to the table like this. We have been trying to use her Dora backpack and she can carry her pump on her back.  So far, she IMG_3379will wear this for a few minutes but it is heavy for her and cumbersome, so she asks to take it off.  It is constant.

AND to make things worse, Max, our troublesome 18 month old, is constantly trying to grab at the tubes and play with the buttons.  So I have to monitor things ALL THE TIME.  Maybe it’s a blessing we have this small house, then I can be more vigilant and hear things from one end of the house to the other. God planned that well.

It’s been a roller coaster of emotions going through these changes.  I am so so sad for her.  In the midst of all the vomiting and discomfort, she had to miss school and a field trip to a local farm to visit the beloved animals.  However- perspective- I know she is only 3, and she will be able to see many farms…

IMG_3432AND then there’s the ignorant comments that are so hurtful. I know most people just don’t and can’t understand.  But please don’t try and tell me just to try feeding her certain foods and then she will eat, or don’t try and tell me that the window of overcoming oral aversions closes after toddlerhood. Please don’t look at me and wonder why my almost 4 year old isn’t potty trained…and please don’t tell me that she has come so far and I should be so thrilled and overjoyed… because yes she has come far and yes she is doing well.  But she cannot keep up with her peers and she cannot eat and I am trying my hardest to teach her to use the potty and to eat.  And I feel like sometimes I’m not doing enough for her and like any other mother when their kids aren’t thriving, naturally, they feel like a failure.  It is very lonely. Motherhood is very lonely, but this is amplified by ten thousand.

But I trust in God’s plan for her and I know we’ll get there.  I like to document these trying times so that I can look back and remember and validate how far we have come.

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

THis is her daily intake of food: 485 ml of Pediasure ( about 4 cans), 425 ml of water and 1 tbsp veg. oil

 

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As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

As long as I find an activity, and as long as she tolerates the feed OK, then all is well :)

 

The goal is to be at step 5 in 2 weeks.  We have to go really slowly…

Love,

Teri

 

 

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WOA exposed

The beautiful room before the event started.

The beautiful room before the event started.

We were so blessed in that we got to attend our friends’ 4th annual Wings of Angels Auction this past Saturday evening.  We haven’t been able to attend the past 2 years because Gabi has been sick or we’ve had tremendous financial stress that we literally didn’t have enough gas money to get to Milwuakee. But not this year!!  We had the honor of attending this wonderful event and all the proceeds go directly to the CICU at CHW where Gabi has spent over 350 days/nights of her life.

 

Over 270 doctors, nurses, friends, colleagues and heart parents attended.  Some of us heart parents are still blessed to be able to see our children’s faces and hear their laughter and be able to wipe away their tears.  Other parents that I know and attended could only dream of what their child would look like today and what their laughter would sound like.  My friend’s hold this benefit in honor of their sweet Carsyn that died in Sept of 2009.  She was only 4 months old.  They raised over $21,000 in her name!  Absolutely amazing!!

Ethan was asked to say grace before dinner. Luckily he had time to have a few cocktails beforehand but he did a great job.  He did such a great job. This is what he whipped together within a few minutes:

Ethan saying the prayer. Kind of hard to see.

Ethan saying the prayer. Kind of hard to see.

Thank you God for our hearts.
Thank you for the beats in this room and
thank you for the rhythm reigning down from above.
Thank you for the Buchmanns and their family of hearts that bring us all together tonight

Bless us, Oh Lord,
and these thy gifts which
we are about to receive from thy bounty,
through Christ, Our Lord.

Amen.

Sitting at our table was one of beloved nurse’s, (Katie) parents, the Buchmann’s pediatrician and his wife, Michelle’s college basketball coach and his dear wife and our dear friends, the Hartman’s. They have a 5 year old son named Jack with HLHS. He is doing OK, similar to Gabi.  He has issues but he is certainly holding his own. We got a lot of sympathetic questions from our table mates.

There is a lot of emotion in this evening.  I got to speak one on one with the head of the CICU for quite some time.  She always asks about all the kids and always remembers all of their names. She told me that it was a tough winter int he CICU. They lost about 8 babies.  MUCH much more than years past.  She was really distraught.  And all I kept thinking was a few things:

  1. It’s amazing to me how much the doctors care.
  2. How much pain those parents are in now
  3. How easily that one of those babies could have been Gabi.

So much raw emotion is surfaced on this evening. Those parents that have lost their children are facing the worst pain that one can ever imagine. Their child’s day to leave this place has already come and gone. I look at Gabi and wonder how many days she has left. Do you ever look at your children and wonder if they are going to be in pain when they die or will they die peacefully? When I kiss Gabi goodnight, I often look at her and pray that she go peacefully…. even if it’s tonight.

You see, their pain is constant, ours is a rollercoaster.  Our pain is coming. Our pain is on hold.  I know she will need a transplant in her future.  Can I trust myself to see the signs of when she needs one?  What if I miss a fatal sign?  Will today be the day that I find her not breathing?

Before I was Gabi’s mother, I couldn’t even bear the thought of death. Myself dying or one of my children dying. I couldn’t go there.  I couldn’t even think about it. Once I found out about Gabi’s heart condition, I was forced to confront the possiblity of death. My daughter’s death. Was I to plan a baptism or a funeral?  These things didn’t happen to us.  We’re all healthy.My grandparents died and my best friend’s mom died, but there were adults. They lead a good life.

But there we were begging for an explanation, begging for help.  I thought I was a faithful person. but my faith was challenged. And today I’m better for it.

I started reading and praying and reading and praying.  The past few months, I’ve been going through a lof of the motions caring for Gabi.  I feed her via G tube and check her shunt. I check  her sats and catch her vomit.  But it’s good to feel those raw emotions again.  It’s OK to hurt for her but it’s a slippery slope and I have to pray to climb myself out of that rawness because it could easily slip into a self-pity mentality. And I WILL NOT go there. Because Gabi is my blessing.  I need no pity; I am honored to care for her and be able to pray for her everyday.

And my 4 other children need no pity either.  When they run a get a puke bucket and have to forgo fun plans because Gabi is sick or can’t participate.  They are better off for it.

We did get a night out so thank you THANK YOU to my awesome sister and my mother for babysitting!

Michelle and I- at the end of the evening. So tired

Michelle and I- at the end of the evening. So tired

With the Hartmans :)

With the Hartmans :)

Me and my man, Ethan

Me and my man, Ethan

The West 3 boyz

The West 3 boyz

 

 

 


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Monday’s appts

Our day began with pouring rain, continued with gray skies but we emerged with sunshine!

Literally and figuratively.

We literally drive in to Milwuakee with scary, temultuos downpuring of rain. When we arrived, my car died in the valet and we were 45 minutes late.  It took us over 2 1/2 hours to get there.  Rarely does it take more than 2 hours to get to Milwaukee. We race up to the Herma Heart Center and we missed our spot for the ECHO. It was at 9 and we didn’t get there till 9:45.  Sigh.

We wait in the waiting room and deal with the car situation. We’ll have it towed from the Valet and while we had our appts lined up, we could get it fixed. Chris and Ethan to the rescue.

A kind nurse came out into the waiting room to tell me that Carol, Dr. Cava’s nurse, was trying to rearrange our day.  She had called to GI to get that appt moved from noon to earlier so that we could do cardiology appts later.  Just reverse them.

However- when Carol called she found out- The GI dept. didn’t. have. us. scheduled. Sigh. Gray days.

Long story longer- thanks to Carol we had our long day extended longer but were able to fit everyone in.  We started with seeing her and getting the EKG. We saw Dr. Cava briefly and chatted a bit about a few concerns.

We ended up waiting for the GI doc, Dr. Martinez, for 3 hours. Yes 3 hours.  We were an “add on” because they messed up our appt and Dr. M was, of course, way behind schedule. Sigh.

I love love love CHW but I have some suggestions for them as far as coordinating all of these appts.  More about that later.

Cardiology Results

1. Heart function is good. Not great, but good.

2. Rythm is good.

3. Her heart is still way enlarged but “normal” for HLHS anatomy. The fluid that has built up around her heart over the years is finally subsiding.

4. Sats were great- around 92. Heart rate about 120. Both perfection!

5. The valve that was the cause of severe backwash before the fontan is much better.  Dr. T made repairs during the fontan procedure and the backwash is down to just mild. Dr. Cava said the valve isn’t pretty… meaning lots of suture line and scar tissues but it’s functioning. For some reason, that stung a little.

6. Her fenestration (hole placed to relieve pressure) is working properly. At some point- either in 6 months or 6 years- or never- it may need to be closed with intervention. This would just be a cath procedure.

7. He did take her off the Aldactazide. She has been on this med since after her Norwood.. almost 4 years.  He contemplated for a while but said we need to try it. This is a diuretic and it has other benefits to reshape the heart.  Risky. We are supposed to watch for increased respiratory rate. All other meds stayed the same- Enalapril, Coumadin and lansoprosal.  I was so excited to get down to 3 meds… but…

All in all Cards was all good!

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GI Results

I almost left during the day because I was so frustrated but I am so glad I waited. Dr. Martinez was so nice and so knowledgable.  He helped me understand her feeding problems A LOT!

1. Gabi has lost 2 lbs since Dec. 2012.  She was 29 lbs in the summer of 2012 and she is now down to 26 lbs.  3 lbs is a lot of weight for a little one to loose. All depts agreed that something needs to happen to help her gain weight.

2.Gabi is currently on a formula called Pepiasure Peptide (a low fat formula) to avoid effusions. That is explained here.  Usually the post fontan kiddos are only on a low fat diet for a few weeks after surgery but knowing Gabi’s history, Dr. Cava wasn’t taking any chances. He FINALLY gave the go ahead to put her back on regular Pediasure! I met a new nutrionist and she went through a long term goal for Gabi and step by step procedure.  I am not too happy with this new plan because we were in such a groove with her feedings and now it’s changing, but I guess the groove wasn’t exactly working- so I will do whatever she needs.  ”They will be done”.

  • In about 2 weeks, the formula should be changed over. It is a gradual process.
  • We need to get her off nighttime feeds- this completely affects her metabolism, stomach lining and interferes with any potty training efforts.
  • We need to start using the pump during the day for longer,  more stable feedings compared with freehand syringes. The goal is to get her to do 5 feedings at a rate of 255 ml/hour.  This will not be easy because we need to keep her in her seat for an hour at a time hooked to the pump, 5 times a day. Yikes.  And that rate  is really fast for her.  At night, her rate is at 46 ml/hour. Right now, I give her 60 ml’s in a syringe an hour!!  I have my work cut out for me.

3. Dr. Martinez started her on a medication called cyprheptadine. Back to 4 meds :) . This is actually a med for allergies, similar to Benadryl. But the side effects of the drug is what will benefit Gabi.  The side effects are crazy. The drug will help her stomach muscle fibers stretch and constrict much more efficiently.  Right now, because Gabi is mostly fed liquids, the stomach doesn’t have a chance to stretch like it does when we have a big meal. This will help trigger the brain function to tell her she is hungry!! Amazing. Because her stomach will not be stretched and constricted so harshly, she will be less gaggy and more likely to swallow her food!! It takes about 2-4 weeks for these effects to kick in, but I am so excited for her!

The lengthy, step by step process of changing Gabi's feed plan

The lengthy, step by step process of changing Gabi’s feed plan

4. Dr. Martinez did mention being referred to the feeding clinic but he wants to get her off nighttime feeds first and get her stomach working more efficiently.

Baby steps in the right direction!

We never made it to Neurology.  Next time.  Last time I was there, they looked at Gabi’s shunt for about 10 seconds and said.. call me with problems.  So, I will get it checked… next appt time.

Oh right, the car you ask??? I forgot the put the car in park… doh!

After all the waiting and waiting some more, we finally got home at about 8pm but it was nice to have daylight… even sunshine on our way home. We left the house at 7am that morning. Gabi and I were absolutely exhausted. still are. But we came home to Daddy’s birthday with lots of hope for our sweet Gabi!

Love,

Teri

 

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Spring Break (!) and approaching appt

Gabi has a big appointment coming up on Monday April 8th (Big Ethan’s birthday).  She will have an ECHO, an EKG, see Dr. Cava for cardiology. She will also see Dr. Martinez in GI and Dr. Lee in neurology. phew.  It’s going to be a long day. Gabi’s PT at school did a small study trying to determine quantitative data in order to specify goals for her IEP. She measured Gabi’s walking speed from her classroom to the school office compared to a “normal” peer her age.

Gabi’s average speed is 2.15 feet/second, or 130.4 feet/minute. The “normal” peer average speed was 3.5 feet/second, or 211.6 feet/minute. I am so glad to have this data to actual see where Gabi falls.

My Sweet Gabi

My Sweet Gabi

We just back from Nashville visiting our most favorite people-The coyle cousins. Jenn, Tessa and Coco.  It was a wonderful vacation!  We only had one scare with Gabi and we did avoid the ER.  Jenn and I were getting her in the car to go go the hospital but the crisis was averted!  She had been throwing up, she was lethargic and looking very cyanotic (blue). We didn’t bring our pulse ox with us so didn’t know how low her O2 was.  We got into the car and she perked up a little watching Dora, so we decided to drive around and call the cardiologist on call at CHW. We stopped at CVS and got an over the counter pulse ox and it read 85-88 so she was OK.  We gave her a feed of pedialyte and she tolerated that ok so we drove around a bit and decided to go back to Jenn’s. The next day she was a lot better!  No clue what it was.  Exhaustion perhaps from the excitement of traveling?

Speaking of traveling, yes we jammed our family of 7 into our minivan and drive to TN. It was only 8 hours and the kids did great!

 

Ready to go!

Ready to go!

About an hour into the drive.
About an hour into the drive.

 

When Ethan Jr was 3 1/2 months old and Tessa (Ethan jr.’s third cousin once removed… yes I did figure out) was about 9 months old, we moved in with cousin Jenn (Big Ethan’s second cousin once removed). Needless to say, when you live with someone there is a bond shared that never goes away.  Jenn and her daughters, Courtney (Coco) and Tessa will forever be some of my favorite people! They are generous, funny, hardworking and oh so smart… the list of good qualities could go on for a long time.

Coco, Tessa, Jenn and Max

Coco, Tessa, Jenn and Max

 

Ten year olds.  They were probably IMing or texting each other while sitting next to one another.

Ten year olds. They were probably IMing or texting each other while sitting next to one another.

Here are a few more pics from the trip.  We were hoping… really praying for warmer weather but no such luck.  It actually snowed in Nashville.  Boo!

One our way home getting ice cream. In Lousville.

One our way home getting ice cream. In Lousville.

Gabi at the Country Music Hall of Fame

Gabi at the Country Music Hall of Fame

Thomas determined to have fun outside. Fire and smores.. his absolute favorites

Thomas determined to have fun outside. Fire and smores.. his absolute favorites

Dragon park in Nashville.  We survived about 10 minutes out in the cold.

Dragon park in Nashville. We survived about 10 minutes out in the cold.

 

Much love to you all,

Teri

 

 

 

 

 

 

 

 

 

 

 

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Easter eggs in the nic of time

I love reading blogs written by other moms.  I get lots of great ideas about parenting, crafts, organization etc.  I read and plan and really believe that I can pull that shit off sometimes.  Then reality hits and we eventually get things done but sometimes I feel disappointed in the way we were rushed or didn’t follow through on all of our plans.  It’s hard not to get upset when you read a blog about how some families colored their Easter eggs skillfully and prayed over each egg and then planned ahead of time in order to bring them to church to get blessed by the priest. It made me feel like a failure. And to top it off they have a beautiful photo display of all their special moments. But I am learning to keep the perspective.

So, let’s see… Easter falls on Sunday, right? Starting to color Easter Eggs on Saturday night at 7 pm works, right?  It does here.

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IMG_5864The Easter Bunny remembered to shop at her local Walgreens Saturday evening and managed to scrape together fun baskets…

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Of course we didn’t get a single picture of Easter morning with just our family but here’s one at Grandma and Grandpa’s.. Gabi looked so cute in her green dress. She was so excited to wear it.  And all the kids were bathed and had collar shirts on. Impressed?  you should be.

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We tried to get a picture of all 5 kids.  Here are the results. Max had already destroyed his collar shirt. He did have one on. I swear.  God love my son Ethan for trying so hard with Max.

 

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It was a wonderful Easter!  We did make it to church but we had to stand in the back.  We weren’t even late but both the church and the parish center were packed. Nice to see lots of people celebrating Our Lord’s resurrection!

Happy late Easter and Happy Spring!

Much love,

Teri

 

 

 

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Book Review

This doesn’t have much to do with Gabi but I have read this book cover to cover a few times and I just have to share it. My neighbor told me about when she was trying to figure out some stuff with her son.

The book is called  I May Frustrate You but I’m a Keeper by Ray Lincoln

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My oldest son is 10 and he has sensory issues. He has been really difficult so I really thought he also had a broken brain and mental problems. Until I read this book!  This book explained my difficult son to an exact analysis.  It is amazing!

 

This is how it works. You take a short quiz and then add up your answers with the directions described.  You then get a 4 letter result which he refines to a 2 letter result. Then the author breaks down each letter: what it means, how common that letter is and how to relate and parent to that letter combo.

So, you take a quiz for each of your children but also for yourself.  This is the magical part.  In all my 29 years, I have never made sense of my craziness.  This helped to explain SOME of it.  The book will explain your letters as regular people but also how you parent as a result of your 4 combination of letters.

The theory is based on the Meijer Briggs personality test but it goes into depth and renames some of the criteria so its really easy to understand and apply.

 

 

You can see, I have my cheat sheet of my 3 oldest kids on the cover of the book.

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and I have marked it up, highlighted, crossed out.. etc

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My second son has always been pretty easy going so his results were not surprising.  But both of my older sons are very different than me so I had no idea how to parent them.  I was convinced that Thomas ( 7 year old) had ADD. He’s a mess. He can’t focus and has a really difficult time concentrating. He is still on the teacher’s radar but the letter results that correspond with his personality are the most common set of results that is misdiagnosed with ADD!  It is in his personality to not be aware of time and to constantly be late. His whole focus in life is fun and he lives in the present moment.  My older son is the opposite.  He will probably never be late and he only understands logical explanations.  It is really fun to have these 2 share a small bedroom…

I have also learned SO much about myself.  That is an entirely different post that I will get to.  I find this stuff fascinating.  On the author’s website, he has a certification process that I really want to take.

Definitely worth checking out for your parenting and for yourself!!

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Valentine’s Day Idea

I wanted to do something fun for Valentines Day even though it is a Hallmark Holiday but at least it’s about love. Each one of us made an envelope out of construction paper (next year I think I will actually sew something out of fabric) and decorated it with their name.  We hung the envelopes on the back of your chairs at the kitchen table.  We all made Valentines for each other weeks before the big day and put them in the envelopes.  We weren’t allowed to open the envelopes until Valentine’s Day. It was so much fun.  We wrote love messages to each other and drew each other pictures.

My love note from my favorite guy :)

My love note from my favorite guy :)

The younger ones took the easy way with stickers.

The younger ones took the easy way with stickers.

Gabi does love Dora

Gabi does love Dora

 

Then on Valenties Day we opened up the envelopes:

 

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WOA Cardiac Dinner Auction

It’s time for our awesome friends to put on their annual auction for Wings of Angels… they always put together an incredible video with the heart patients for CHW.

The auction is on April 13th and they are always collecting donations of any kind : wine, gift cards… anything. Let me know if you want to donate anything or attend with us. It is an awesome event filled with laughter and tears.

These are our trial pics.

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These are our finals that we submitted for the video:

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IMG_1906Obviously, we are not photographers and the thank you notes do not do justice to our sincere thanks to our dear nurses and doctors that have become dear friends and family…

Love,

Teri

 

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Come on Spring!

Well, Gabi has lost another pound. She is down to 24.5 punds compared to 29 pounds in the summer.  Calls are in to GI and to Dr. Cava for appts. She is due for a check up and ECHO anyway.

Gabi’s PT from our wonderful school district emailed me and we agreed that Gabi has gotten weaker. This is a clip of what Karen said :

I’d say in the last couple of months she has seemed more tired and does not have as great of endurance as she did before. For example, she has always walked slower after PT than she does before, but this made sense because I’d usually tire her out. But the difference in speed has been more noticeable lately. She in general as seemed to be moving a little slower, and I feel like I might be giving her more little rest breaks than before. 

When I pick her up from school, almost everyday she says to me with tears in the eyes that she got too tired at school today. Some of the assistants don’t know her and when I see them pulling her arm trying to make her go faster to walk out to the car, I want to punch them in the face.  I say to them, please, let her take her time.  They always apologize.  I see the other 3 1/2 year olds sprinting to their moms after school, it makes me so sad.

Come on Springtime!! We need to get outside and get exercise!

Just some fun pics..

 

After school puddle splashing

After school puddle splashing

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Gabi and Max

Gabi and Max

Thomas.. the mad scientist

Thomas.. the mad scientist

 

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Happy New Year

Happy New Year to everyone!  Our blog has been broken for a month or 2. I think we finally got it fixed.

Gabi is our little miracle.  She is doing really really great. We had a cardiac check up with Dr. Cava in December. They didn’t change much, just a few meds.  She is tolerating the change just fine.  I really want them to put her back on the higher fat formula because she has lost a total of 6 lbs!  She doesn’t have 6 lbs to loose!  She is skin and bones. Of course, their solution is to just give more of the Pedialyte Peptide (the lower fat formula) but the problem is, she is already taking in 4.5 cans of this stuff. She literally cannot fit that much liquid in her body. And then of course, the eating becomes the issue. I have called 3 feeding clinics. The first one is Central Dupage. Gabi had an appt with Mary Massery a while back and she recommended this feeding clinic.So, of course, that’s the one I want. BUT they are out of network for our insurance plan.  However, I am calling to find out if there are ways around this- if they can simply change the code or something to make it different. It can’t hurt to ask, right?

The second one is at Lutheran General Hospital but the woman who leads the program is on maternity leave until May!

The third option is to go back to CHW and try out their feeding clinic again, which I am not a fan of.

I have called about 5 other private clinics and when I describe Gabi’s eating issues and heart condition, they openly admit that her case is just too severe for them. She needs to be seen in the hospital. It always stings a little to hear that.

She is eating a little but we don’t force her.  I don’t tell her she has to eat because I don’t want to make the situation worse.  I probably need to push her a bit more, and find the time/energy to really give her time with me to eat, which of course, my mommy guilt is in full gear.  Right now, we are just giving her an over abundance of positive feedback when she chooses to eat or drink and when she swallows something, the whole family cheers her on.

Her heart is healing well and her sats are maintaining around 87%.  Her endurance is still pretty low but getting better. Her next appt is in March.  I have asked Dr. Cava and Carol, what next?  and they said nothing for hopefully many years.  That feels so great.  But I know that transplant will always be on a monkey on our back. I feel so blessed that she is doing well right now but I still get sad.  I think of her heart beating and that something could go wrong at any moment inside of her. But then God reminds me that nothing is certain, even with my healthy kids.  These past 3 months have been a little too normal for me and it makes me uneasy.  I am anticipating the next moment of crisis but just enjoying every moment of this boringness.

2 things-

We have more spice rub!  Ethan was written up in the Daily Herald and this prompted a visit to the Buchmann’s for a get together and a spice rub adventure. The article is here. Pretty fun! To order spice rub, go to The West 3

Speaking of the Buchmann’s- their annual Wings of Angels Auction is coming up on April 13th.  Donations are being collected for their silent auction.  If anyone wants to attend to this fun event or to donate a product/gift card… let me know.

Here’s to a wonderful 2013 for everyone!
Much love,

Teri

 

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Her first school Halloween!

Oh wait- judging by that title I could see why you might think I was going to be gushing over how proud I am of Gabi and how cute she looked with all of her schoolfriends all dressed up for Halloween.

No.

I despise Halloween.  I dread it every year and am SO relieved when it’s over. Let me clarify I know Halloween has a Christian explanation but our secular society has gotten a hold of it and capitalized on every aspect.  I don’t mind the trick or treating and I certainly LOVE seeing my kids have fun and get free candy but when did Halloween become another over commercialized holiday that is celebrated at our schools!?  So- we don’t do anything for Christmas, Hanukkah, Yom Kippor, Easter, Ramadan, but we overdo Halloween, for what?  to say we had parties at school!?  Then don’t do any parties… school is for learning anyway.  The entire week of Halloween was wasted. No spelling that week, no new math lessons, hardly any reading because they are just too wired to sit still. I’m not a total curmudgeon; I am actually quite a fun person and Love to have fun with my kids and their friends. We are very creative with our fun.

But, when you have 5 kids (even 2 or 3 kids), any holiday gets very expensive.  When each child is to dress up in a costume, it is crazy ridiculous.. even if you make a costume, there is always something needed that costs money. So Halloween time, we, as moms, help our kids carve pumpkins, run around to all the stores trying to find the perfect sword, or glove, or magic wand to match the child’s costume. We sew, hot glue, practice the make up. God for bid, something breaks before the big reveal, you are screwed. We duct tape the last accessories, we braid the hair to get the perfect curl and then Halloween morning- we (meaning me) race around applying make up to our kids faces in either gruesome, scary contortions, or glittery, sparkling butterflies and princesses. For me, this is in addition to our usual crazy morning with a special needs kid with meds and tube feeding schedules for Gabi, changing diapers, eating breakfast…etc.  Don’t get me wrong, the kids look great when their costumes are complete and I try to snap a quick picture even though only 3 of the 5 are dressed up so far.  So I get them to school and make sure we have our donations for the room moms (this year- 2 cans of frosting, cut up apples, and cash for the other 2 rooms) and then the race really begins.  We race to the preschool to catch the parade where the young children march around the playground and parking lot with their hands freezing because we can’t put hats on their heads… it would ruin their costume!  Moms and Dads, even grandparents gather all around, cameras ready, chatting about how cute they all look. Half the kids are in tears because they don’t know what the heck is going on and they are freezing.  But all the moms gush over how cute the kids look. And everyone looks and judges over the cute, store bought costumes that are going to be thrown back into our Halloween bins in less in than 24 hours.  Now, I complain about this but am I guilty of this behavior? absolutely.

 

 

When the preschoolers get back into the warmth of their classroom,  Max and I get back into my car and race to the Kindergarten parade that started 5 minutes ago. I make it to the end, the description is virtually the same, only the children are a bit older and less are crying.  One child was crying in the corner talking with another teacher because he wasn’t wearing his costume. Either his mom forgot it was Halloween (!!), or didn’t know the Kindergarteners were to wear their costime to school. Nonetheless, the child is very upset. I grab a few picture of my adorable pink leopard Kindergartner and her friends.

 

Ok- K parade, check.  Max and I race to Walmart to pick out our candy.  I can’t buy candy before hand because I eat it all.  me… just me. Each bag of candy has about 10 pieces and costs $2.89 a bag. We live in a neighborhood with a lot of kids and we can’t be the cheapos to hand out just one fun size candy bar…so I spent over $40 on candy.  $40 on candy.  $40 for candy….

Race home, give my sharkboy a quick nap and then off to pick up the kids.  I will pick up Gabi early because I have to get the big kids school to get them home.  All the kids at our school go home for lunch on Halloween to change into the costumes.  Yes, we have 45 minutes to eat lunch and then get the big kids into the costumes and back to school to watch their parade at 1:00. Again, lots of camaras, judgement of costumes, not as many tears, but lots of freezing hands and bouncing off the wall children. To pick up the 3 big kids takes over 15 minutes because the entire school is going home for lunch and parents in their cars are stressed to their limit, same as me… deep breath, we make it home.

Their parties go on at school while Max, Gabi , Marissa and I  head home for a quick rest cleaning of the house. Pick the boys up at the end of school at 3:40 and then head home to refresh their costumes and hope to God that my husband has caught an early train to take them all trick or treating. Luckily, I remembered to throw a dinner (thank you to my moms plus group: supperclub) into the crockpot at 5 this morning when I got up. The kids get home, we have a quick “healthy” snack and get ready for trick or treating…. only to find my 6 year old Marissa freaking out while tearing through her room.  She informs that she lost her leopard ears and her stuffed animal leopard, which she has named, Leppy (yes, it does sound like the animal has leprosy). So, we back track and she remembers that we left the beloved items in the driveway of our friends’ house while watching one of the parades.  Awesome.

I was ready to put the kids into the car and drive the 2 blocks over there to hunt down the prized posessions, when I receive some grace.  My mother pulls up in front of my house.  Halleluia.  Marissa and I race over to our neighbor’s and her stuff is no where to be found.   Our friend was home and even looked in his bathroom. I thanked him and drove my crying, devastated daughter home. I need a freakin’ drink. 4:05. All the neighbor kids are already out trick or treating.  We are missing our usual posse. Marissa and I  get home, to find Ethan, my oldest son, the squirrel, bleeding in the kitchen and my middle son, Hawkeye- from the Avengers, crying and not so sympathetically begging for forgiveness.  Ethan had cut himself on Thomas’ flying bow and arrow.  We wrap up the hand and when I’m ready to pack up the stroller and hit the sidewalks, more grace for little ol’ me.  Marissa cries out from her room that she found her Leppy and her leopard ears. Halleluia.  And then- my husband walks in the door. Another Halleluia. Max is screaming because he hasn’t napped and my mom is doing her best to comfort him.  Trick or treating went fine, despite the usual whining and fighting. But all of the kids were polite by thanking each of our lovely neighbors for their candy.

So, my disdain for Halloween in summary?  Spending way too much money/time/energy, wasted time in school, too many judgements on costumes, and then having too much candy in the house… all for what?  A loosely based Christian holiday totally distorted by our consumeristic society.

However, did my little Gabi look precious in her butterfly costume? Yes. Did she have fun at school at her Halloween party? yes. Did all the kids have fun? yes. Usually I will say all the stress is worth it. But in this case, it was not. I still despise Halloween even though it’s over. However,  I do love when they get home from trick or treating and their noses are cold, makeuped faces all worn off and dump their candy bags on the living room floor.  I love that moment.. or maybe I am just happy Halloween is over.  I may just keep them all home next year and have our own Halloween party before trick or treating.

 

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Brush those teeth

Brushing teeth.  Gabi was intubated for a long long time as a baby.  This means nasty suctioning- in her nose and mouth, mouth cleaning with mouthwash and a sponge by different nurses in her face.  Then she had a ng tube (feeding tube) down her throat for quite some time before her G tube was placed.  All of these tubes required tape; the kind of tape that needs to be peeled off your skin every few days to clean.  She never ate by mouth… ever. She never had  a bottle… ever.  She never had comfort in or around her mouth… ever.  It was tape and tubes and gagging… for months… years.  And now that she is 3 and is trying so hard to eat for pleasure, she is doing really great, but to touch her mouth, in and around, is still not a pleasurable experience for her.  She has no idea why, she can’t remember, or explain but putting on chap stick, wiping her face, and god for bid we try and brush those teeth!

I am surprised that she doesn’t repell everyone away with bad breath… but her breath is still as sweet as a baby.  However, her teeth are scuzzy and I can’t clean them.  She locks those lips and shakes her noggin so that I can’t even force it. Of course, we’re not total newbies, we try the “Gabi, you want to do it yourself?” trickery.That doesn’t work.  We try having her siblings do it and pretend like they are enjoying themselves tremendously while brushing their teeth. We’ve tried all the different characters of toothbrushes… from Elmo, Diego, Disney Princesses, Little Mermaid, Dora, Barney… We’ve tried all the different flavors of toothpaste.  Bubblegum, Strawberry, mint… nothing is working.

Some of the toothbrushes we have tried with no success

She had to go to the dentist before her surgery in the summer and that was no picnic.  The dentist had to force her mouth open just to look.  He managed to clean a few teeth and I heard the gagging begin and I warned him that she will throw up on him.  He seemed confident enough not to back away. Not sure if he didn’t believe me, but she let him have it.. all over his coat and tray.  I warned him.

My kids’ teeth are fairly clean. Tom’s teeth get the most yellow and I literally have to scratch the plaque off his front teeth.  But mostly, they are good about brushing at least twice a day.  Not sure how to help Gabi with her teeth brushing.  I am going to assume that we’ll just keep trying and eventually she will join in with the family teeth brushing. At least they’re just baby teeth.

 

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Yay… the normal stuff…

oh no, the normal stuff…

Potty training. It is hard enough to potty train a healthy, strong 2- 3 year old.  But when it comes to a physically weak, unbalanced Gabi lacking a “normal” feeding routine, it presents all kinds of new challenges.  Gabi is doing so so great… she continues to blow my mind with her sense of humor and continued healing.  But when it comes to speed, agility, balance- she is def. not a champ.  It takes a lot of strength to get up onto a potty by oneself.  When a normal toddler says, or you may suspect, they have to go- what do we do?  We run.  Gabi doesn’t run.. she doesn’t even walk briskly… even though she says “look at me- I’m fast!”  She’s not.  I can certainly wisk her up and carry her to her Dora potty- but she is 3 and wants to do everything herself.

The other big issue is her overnight feedings.  Because she is still tube fed, she really doesn’t have a rhythm of meals that affects metabolism and bowel regularity   She is fed all night long with a pump and always has a large bowel movement in early morning.  If it comes to it, I will wake her up early and try to hit the potty, but as of right now- I am planning on letting her sleep until she naturally wakes and relieves herself.

She is approaching 3 and a half.  Cognitively, she could have been potty trained back and forth several times now, so of course, the motherly guilt is building and having her still in diapers is making me feel sad for her. And I feel responsible for that.

While we’re on the subject-Max, at the age of 13 months, has found his wiener and has not let go of it since it has been discovered.  Love my boys.

 

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Home!

We are home!  We were in and out of CHW in world record time!  We arrived there at 6:25 am checked in and we were discharged at 11:45!  Amazing.

Gabi is exhausted and so am I. We left this morning at 5:15 in the pitch dark after a long day at pre-op yesterday but we can rest easy now. She just has a bandaid with a few stitches.

One of my bestee nurses,  who works the night shift,contacted me while I in the waiting room and told me that Gabi had room 4 on West 3 reserved… just in case.  They didn’t tell me that!! Stinkers.

We did not need the room because by the grace of God and her own bravery, my daughter is a rockstar! Thank you for all the prayers… I am SO relieved.

A little nervous before surgery

Sleeping at home comfortably…

Mike Barnes, Dr. Tweddle’s PA, and one of my favorite people!

Even with Pablo in sight, she was so miserable waking up

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Done!

She is out of surgery and doing fine! they were able to make a small incision and pull the wire right out.  She is pretty miserable but we will be able to go home in a few hours!  Hallulia!

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Surgery underway

They took gabi back a few minutes ago.  She really is my hero.  She is so brave!  I know she is scared and yet she looks at me to get a glimpse of reassurance and then gives the nurse her arm or whatever they are asking for.  I know this procedure is no big deal and I know God’s plan for us all is so much greater than we can comprehend, but these moments are still so hard.

Ethan is home with the other kids and I am here with Gabi.  It is very lonely. I want him here with me to be able to hear what the doctors say and to be able to see his daughter when she opens her eys again.  I know.. I know, Poor me, right? This will all be over in a couple of hours and theN recovery.

Barnes is with her so I am so comforted by that.

Thanks for the prayers,

Teri

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Another day

Gabi is scheduled for surgery at 8 am today.  We had a pre-op appt yesterday with Dr. Tweddle’s PA (Barnes :) ) and a surgical NP. All went fine.  I convinced them that she just had labs drawn 2 weeks ago at her check up and they agreed those were sufficient- she didn’t need a blood draw again!  Yay! She needed a chest x-ray and just a physical exam.

Barnes explained the procedure and indeed, it is “very minor”. The procedure should only take about 30 minutes but getting the lines in and the sedation and the intubation and then waking her up after will take about 3 or more hours.

Please say a prayer for Gabi this morning.

Thank you,

Teri

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Hello everyone.
Gabi had a cardiology check up on Monday and going into the appt, I had a few questions, as I always do.

Dr. Cava and Carol gave her a great report.  Her labs all looked good and her sats were between 88-90.  In the next few months, they really want her sats to be in the lower 90′s but I am so thrilled with them being in the upper 80′s. I can tell she feels good and her much more energy and stamina.  AND Dr. Cava gave us the orders to discontinue all Oxygen orders from Walgreens. What does this mean???  It means all of the oxygen tanks and the air compressor are gone!! out of the house!  They all were so cautious with Gabi because every time she would get sick or just have a bad day or 3, she would need that O2.  But they think she is now stable enough that she doesn’t need it around all the time!! yeah!

One of the querstions I had for them was this bump on her chest.  Her sternum was healing all crooked and then one day about 3 weeks ago, we noticed a sharp spot poking out underneath her skin. It was quite alarming.  I had called them when I noticed it and they assured me that it would be fine until her check up.  Carol knew immediatley before even consulting with Dr. Cava that it was a broken sternum wire.  After heart surgeries, they need to wrap the sternum in wires to help it heal properly. Well, of course, Gabi’s broke.

She is scheduled for surgery this coming Tuesday, the 25th.  Pre-op appt is on Monday.  I know its a minor procedure and I am so so grateful and blessed that she is doing well but I am just so upset.  She is finally getting to the point of not being afraid when her speech teacher puts on gloves on.  She is so aware of things that she is going to be so upset when we go in to that pre-op room.

The procedure will be a couple of hours with Dr. Tweddle at the lead.  She will need to be intubated and recovery is a total crap shoot. She might be able to come home that evening or she may be there for a day or 2.

Please keep Gabi in your prayers.  Thank you!

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Amazing

Gabi is doing…. ammmaaazzzing!

It is has been 4 1/2 weeks since her surgery and she is doing BETTER than before the surgery!  yes, that’s right… Better than before the surgery.

Her endurance is amazing.  She walked from our neighbor’s front door all the way down their driveway all the way on the sidewalk and UP our driveway to our front door and then try to tackle the front door stoop by herself. She has NEVER been able to walk that far… ever.  She has NEVER made it up our driveway on the incline EVER!  It is unbelievable!!

Tears come to my eyes when I see her and she says “I’m fast” and she is trying her darndest to run.

We had a second follow up appt with Dr. Cava and he is amazed at how well she is doing.  Her sats are up to 90-91 which is perfect for her.  On the chest x-ray, he could see that her fenestration ( a small blow hole in her IVC) was still intact, which is good. Sometimes, the hole can close on it’s own causing the O2 sats to get too high and this can cause too much pressure in her heart. But hers looks great.  There are no chyllous effusions, even thought we took a risk with that higher fat diet.  Amazing.

The new formula is working out great.  You can tell it is not ideal for her because she still poops 3 times a day but they are not diarhea so it’s fine.  She will continue on this formula via her G- tube for another month or so, then they’ll talk about switching her back to regular pediasure.

More great news is that she is MUCH more interested in eating than ever before.  She comes in the kitchen and says… “mom, something to eat, please?”  “What?”  She has never asked to eat before mostly in fear of throwing up.  She is still not able to swallow too much but the fact that she wants to and keeps at it is just awesome.  Next hurdle will be potty training and eating.

Her labs all looked great. INR level is at 1.82 and they want the levels to be between 1.5 and 2.0 so it is perfect. Her platelet count is back to normal and everything else looked great!

I know it’s so easy to say God is so good when things are going well, but I never stopped believing and I never gave up on Him.  We have lots of friends that are in a total shitstorm right now and I am praying for them as they trudge through their battles everyday.  I do believe that everyone is either just getting through a crisis, living in a crisis right now or about to face one.  And the results may not always be the way we want them to be, but we have to believe that the sun will come up again and we are stronger than we think!   I cannot tell you how thankful and grateful we are that Gabi’s results are amazing!!

Thank you thank you for all the prayers and the support.  The dinners, the babysitting, the friendship, the texts, the emails, the phone calls…thank you everyone.

On a lighter note, my little brother got married this past Saturday. We weren’t able to get there because the wedding was in Telluride, CO. But our oldest son was able to go with my sister and my niece and meet the rest of the family out there. CONGRATULATIONS Tim and Courtney. We love you and wish you the best. Life will NOT turn out the way you think or plan, but just put your seat belt on and enjoy the ride.

Happy end of the summer and happy back to school days!

love,

teri

At the park feeding the ducks

With our wonderful neighbor, Steve. Gabi thinks she is Korean sometimes…

 

 

 

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Life at home

Wow.  It’s been a busy, crazy few days at home and I apologize for not posting sooner.

We got home Wednesday evening and Gabi was really fussy and uncomfortable.  I thought she would be so happy to be home, she was but she was just miserable.  The first night in her bed did not go so well. She was up all night long whimpering and crying. she would fall asleep for brief moments and then awake with a start.  I didn’t know if she was in pain or in fear.  I asked a few other heart moms and Carol, our cards nurse, and they all told me that a lot of times, the kids are just really traumatized for a period of time, suffering from nightmares and just general anxiety.  so sad. The next day, she wouldn’t sleep and she was just really uncomfortable.  Then the diarrhea started.  And things went from difficult to worse.  I called the cardiologist and of course, reached out to my trusted posse of nurses, and they were attributing it her new formula.  It is called Vivonex. It is predigested and low fat. She needs a very strict low fat diet for 8 weeks following the fontan to avoid any plural effusions (fluid building in her chest).

I talked to our dietician in CHW who has been with Gabi since birth and she told me to start with simple fixes.  We added 10 grams of fiber to the formula and we waited and hoped she didn’t get too dehydrated.  She is on 2 diuretics and with diarrhea, there was quite a concern there. The benefiber did nothing.  Her poor behind was ripped to shreds with terribly severe diaper rash. I started to giver her less and less food because I knew it was just a vicious cycle.  More food= more diarrhea.

We waited it out until Monday, our follow up appt.  The nights that preceded the appt were much the same: she was up all night long tossing and turning. She was crabby during the day, exhausted and wasn’t getting up off the couch, like they wanted her to be.  Monday morning, she fell asleep on the way to the hospital and about 10 minutes away, I wanted to give her a warning before we just pulled up the dreaded entrance of CHW.  I said, we’re going to go see Dr. Cava, he’s going to listen to your heart and then we’re going to go home. The look on her face almost made me crash.  She silently cried until we pulled up to the entrance and then it wasn’t silent any more.

Labs were first- horrendous. Chest x-ray was next- not as horrendous, but she was still terrified. Then off to Herma Heart Center to see our friends.  Carol did an assessment and agreed that something needed to happen with this formula. She also told me that the stitches that were in those chest tube scars should have been taken out before discharge from the hospital and now they were completely scabbed over.  great.

Dr. Cava was awesome!  4 of us pinned her down and he dug out the stitches. this was all following the general exam of course.  But labs looked great.  Her INR level was at 1.7 and it should be between 1.5 and 2.0, so it was perfect for now. Platelet count was up to 150! Her CBC was a still a little askew but all to be expected.  her chest x-ray looked great too. All fantastic news!

Dr. Cava explained to me that there was actually no scientific proof of the low fat diet working.  This is a new trial they are running to see if it might help stop chest effusions.  And actually Dr. Cava was the one who implemented this new trial! He agreed that she needed to come off this formula.  He was going to put her on a higher fat formula, but not as high as Pediasure, her usual formula.  It is called Pediasure Peptide. He said without any proven evidence that this works, he couldn’t justify keeping her on a diet that didn’t agree with her. The risk was worth it. (let’s hope so!) He tweaked some of her meds and then we waited for Julie, our wonderfully amazing dietician.

One of the nurses brought in 2 cans of the Peptide and I asked for more and she looked at me like I was crazy.  Then Julie came in and said, “that’s all they gave you?”  She ran into her secret lair and brought me a whole box with a script for more.  She’s the best.  We went through the new regimen and she told me to keep her NPO ( no food) for a good 24 hours. We were to give her Pedialyte and some oral feedings if she claimed she was “hungry”. Wouldn’t you know it- she was SO MUCH HAPPIER!! It was the food all along that was making her horribly uncomfortable.  Her poor little tummy must have been so upset and her bottom was tortured.

I just started the new formula at noon today, so let’s pray for no diarrhea.  Because of this higher fatty food, she is at a higher risk now of having effusions, so we are on high alert.  The only ways of knowing are if her breathing rate increases and if we want to get crazy, we can weigh her everyday to check for a jump in her weight that might be fluid.

She was only up once last night!!! She is like my Gabi now, only weak and a squeaky voice.  But with some rest and her tummy feeling better, she is much happier. She is up walking around and wanting to play again.

Thanks for all the support, dinners, babysitting, visits, wine and kettle corn (it’s the little things!).

Love to all,

Teri

 

 

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We are….

GOING HOME!!!!

 

 

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What a good day!

Gabi walked a few steps and actually played in the playroom for about 15 minutes.  She got pooped quickly but we did this twice today and the docs are loving her progress.

Her labs looked good.Platelet count continues to climb to 84 today. 150 is normal so she is getting there. She has low sodium and her potassium counts are messed up but this is all expected after open heart surgery and all easy fixes with her diet.

Her chest x ray looked great… Actually better than they expected :) so we are on track for coming home TOMORROW!!!!

They want to check her labs one more time in the morning and look at another chest X-ray to ensure her progress. Her INR levels are not quite where they want it yet so when we get home, we’ll have to get weekly blood draws for a while so they can adjust her dose of Coumadin as necessary. She is also on a low fat diet and put on a low fat formula via g tube for 6-8 weeks.

Please say a prayer for getting out of here tomorrow. I know she will thrive even more at home.

We are so grateful. the kids are busy making welcome home signs…

As we leave this incredible institution, we leave behind families with children that need heart transplants or are suffering from cancer or have passed away leaving a void and unimaginable pain . Often times I get sad for gabi and get tired with all that comes with having a special  needs child but all I need to do is open my eyes to gain a little perspective. Our lives are all in God’s hands.

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Our new digs

I miss my medical family on west3 but they had to kick us out for a sicker baby.  It’s such great news being up on East 8 because they think gabi  is doing well, so I’m not complaining. I’m just saying I miss my comfort zone of the ICU where I literally know everyone.

Gabi is doing so so great. She slept all day yesterday and today she woke up and for the first time in over a week, she smiled and actually wanted to get up and out of bed.  She is watching Dora and Diego and is actuslly responding to their silly questions. I was in tears as I see glimpses of my Gabi coming back.

Our fate rests with lab results and chest x rays. Up on the regular floors, labs andX-rays are not at 4 am,..They are much more reasonable at 7 or 8 am (thanks Jennie for changing ours to 8). We haven’t heard results back but our same phlebotomist came by this morning that knows gabi and her lack of veins.  She got a stick in one try but unfortunately the vein blew, but she got another vein fairly easily. We are waiting for specific results of platelet count and INR count (Coumadin levels). Chest X-ray  will show any plural effusions.

PT is here to take Gabi to play.

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Fontan post op day #7

So much good news!

The chest tubes are out and while she is still sedated from that, they are here doing an echo.  Nancy just wants to check and double check her heart.

Platelet count was up and they really don’t have a great explanation for the reason in the drop. Could have been viral, could have been a reaction to all the drugs during surgery… But the fact that her body is producing them again is all they needed to see. Last night her count was 45, today was up to 64!

As off late last night, the plan was to giver her another transfusion of platelets while they take the chest tubes out to avoid excess bleeding. They were just hoping her body would at least hold on to some of the platelets from the transfusion yesterday. But Gabi exceeded their expectations and the platelet count is no longer an issue!

We are being transferred out of ICU this afternoon to 8 East, the step down unit. Nancy didn’t seem think it was out of the question to be home in a few days. Unbelievable.  Miraculous really.

A week ago today she was on bypass, yesterday we thought she had a possibly life threatening clot and today we are talking about home.

This life is a rollercoaster and I’m so grateful that we are on this ride with such wonderful people. Our friends, family, nurses (who have become our lifeline)doctors, all the staff here at CHW- from the cleaning ladies to the chief of surgery. .. We have some amazing people in our lives.

God works in funny ways. He brought us here to meet this whole new family of heart people in Wisconsin. As my friend and Gabi’s nurse from when she was a baby told me” gabi is such a fighter, Teri. You all are. This is just one more pothole on the journey. Of course it would be nice if someone would fix the freaking road, but the scenery sure is pretty…”

she’s so right. And I am so thankful and beyond elated that Gabi has made it this far in her journey with us and that God has provided us with such a beautiful terrain and wonderful travel companions..

 

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64!

Platelet count is up to 64!! No more suspicion of a clot…

Chest tubes should be out in the next 2 hours!

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Platelets up

The results of her platelet count went up to 45. This doesn’t  mean much as far as any explanation. Comparing these results to the  Labs we’ll get in the early morning will give the docs the info they need.

Dr. Nancy gave us the go ahead to take a walk and leave the CICU. Gabi and I got to walk outside!  It as hot and every bump was excruciating For her and after about 15 minutes she was wincing and I asked her if she wanted to go back to bed and in her squeaky voice, said yes.

The plan is POSSIBLY getting the chest tubes out inthe morning. If they do this,, they can get better pictures in the echo tomorrow.

Please please pray for the chest tubes to come out!!

Thank you so mUch.

Love,

Teri

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Some results

Got the results from the first test.

It is not the best case scenario. The test was negative meaning she has not developed an antibody for heperin.

3:00 is the lab draw for a platelet count. Still on the table: infection or clot

Please just pray for an easy lab draw.

 

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Better explanation

We still don’t have any results but I got a better explanation and possibilities.

1. Hematology  ordered labs to check for antibodies to an anti coagulation drug she was on called heperin during the surgery. Gabi’s body might have neutralized the heperin in some way causing her platelets to drop.  Hmm it made sense wh in th ey were explaining it to me.  This would be an easy fix to justnot give her heperin anymore and her body will eventually rebuild her platelets.

2. A clot is still a possibility, but much less likely than I initially thought. She has no visible signs of a clot anywhere. No redness, no spots, no swelling, pulses are good, she is breathing fine and her cardiac function looks good.

3. An infection.  Platelets are naturally destroyed by our bodies if are have a virus or infection.so, if she has a random virus or something, her body might just be reacting in a normal way.  Her siblings were all sick about a week ago with a respiratory linfection and we prayed that she wouldn’t catch it.  She is coughing a lot, although th ey are still saying this could be due to being intubated. The coughing is worse, but she she does not  have a fever.

What are they going to do?

Labs were ordered to test for the antibodies to heperin

They are giving her pLatelets right now and then will take labs immediatly following to see how her body reacts to them. If the count stays around 12,000- they will know that she probably has infection and her body is destroying the platelets. If her counts go up, then they will remain hopeful that they will stay up. Another blood draw in the early morning will show us of they are staying up. If they drop, then there is probably a clot and the ultrasounds and echos will begin to find it. If they stay up, they will just contribute this to trauma from surgery and med side effects.

They just brought in a cute dog for pet therapy and she wasn’t even interested in that. She is so miserable. Hopefully just 1 more blood draw today.

 

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Platelets

Hematology came down to talk to me and dr. Nancy.  They are gethering data and going to give their recommendations to nancy and wel’ll take it from there.

Best case scenario- nancy said something about antibodies effecting the platelet count.  This can managed easily.

Worst case scenario- there is a clot in heart. Nancy does not think this is the case because there are no other signs/symptoms.  Her numbers all look good and cardiac function seems to be good. She didn’t even know what they do if this was the case.

Probable case- there is a clot somewhere …This can be treated with anti-coagulations but I thnk the tricky part is finding where the clot is.

 

 

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We need prayers

Lab draw results from the morning were troublesome.  Gabi’s platelet count dropped to 12.  This is after she received platelets yesterday… There should have been a big boost. My friend / gabi’s night nurse explained to me at 5 in the morning that this means there most likely is a clot somewhere. They had to come back again for more blood and run a DIC test (??) which will tel them if there is a sensitivity to a clot. Based on those results, they will either give her more platelets and see if she gets s boost (seems like a waste of a lot of things, imo) or they will try and find the clot with ultrasounds. She has good pulses so the good news is that the clot, wherever it is, is not totally occluding the pathway.

This also means that all chest tubes will stay in. It will also mean weeks of lovenox shots.

Big Ethan took the kids home late last night and they all cried having to say good bye to me and gabi again . They had fun at the Ronald McDonald house but this is so hard on them too.

Please just pray for strength for Gabi. Every blood draw is tortuous. They are running out of veins to poke her in. She is so bruised and a lot of her veins have blown out so they can’t use them. She has already been poked 3 times and it’s only 7:15 in the morning. Neither of us has slept. She is so tired but every time she falls asleep, someone comes in to bug her.

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Ultrasound results

Quick update- ultrasound results were negative meaning no clots were seen. Yeah!

She received platelets and is doing fine. I pray those chest tubes come out tomorrow!

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Saturday morning update

I had to think a long time to decide what day it is… This week has been a total blur.

Gabi is doing really well. Still some obstacles… Her platelet count is still trending downward. It was 90 (actually meaning 90,000) a few days ago, 54 yesterday and today was only 27. A normal healthy person should have a count of around 150. Dr. Nancy was here this morning ( and she is the chief of the ICU) along with dr. Mitchell, the other incredible cardiac surgeon, and our surgeon, dr. Tweddell, was on the phone during rounds trying to decide what to do. Nancy and dr. Mitchell wanted to wait it out and give her body some time. Dr. Tweddell had a different opinion. He ordered an ultrasound of her neck vescles to check for a clot. Because she is not bleeding like crazy anywhere, the question is if her body is making patelets, where are they going? They would stick and collect to a clot and not be in circulation where the blood draw would provide evidence for them. They just completed the ultrasound… No results yet. And they are giving her platelets.

As for my volume suggestion, I was shot down. They told me they like to keep these kids just a little dehydrated in order to dry up those chest tubes. But her heart rate is back downand her respiratory rate is much more appropriate.

Her feeding rate is still pretty slow and there is a little chyllous draining from the chest tubes, but the amount draining has slowed everyday so they are thinking maybe tomorrow to pull out those chest tubes. This would be SO unbelievably exciting! After that, the road to recovery and home is in sight! Plus they are so uncomfortable for her.  My friend and favorite nurse, cariane, was here last night and we both decided after listening to her moan and wail for about an hour that she deserved a dose of something. Morphine was the only drug the docs would approve. she already had a dose of Tylenol and they won’t giver her ibuprofen or any form of it because of her low platelet count. She received some morphine and it actually calmed her down really well.

She woke up  at 4am for the daily chest xX-rays and then because her central line is now out, they have to poke her for labs. The first Phlebotomist tried twice and couldn’t get a vein. The second one tried twice and failed. After 2 tries, they are not allowed to poke again (love that rule!) but I knew the docs were going to need labs. I knew someone would be back. At 7am, another phlebotomist came in and she assured me she was the best. She got the blood ! I dread tomorrow mornings lab draws. Gwbi was atrooper. At this point she is so done with everyone and everything. She is so tired of bring poked and listened to and bandages being changed.  I feel so awful for her. She doesn’t deserve this.

Every time that door opens now, I am on the defense ready to fight for her. I understand that they need to examine her but all of the residents and fellows don’t need to also. I know they have to learn but it gets to a point where I want to scream… LEAVE HER ALONE!

Please continue to pray for no more chyllous and for those chest tubes to come out!

Thank you all so very much and have a great weekend!

Love’

Teri

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Visit from brothers and sister

We all trekked up from Arlington Heights this afternoon to visit The Gabs. The kids had made cards and collected various toys from around the house that they thought would cheer her up.

We arrived at the room just as three nurses were working with Teri to move Gabi from her bed so Teri could hold her and they could change the bedsheets. It made for a lot of commotion as the kids were super excited, Gabi was excited nurses were moving things and I tried my BEST to keep Thomas from tripping on the chest tubes that snaked across the floor in front of this feet.

Big brother and his sister.

Big brother and his sister.

Gabi was able to make it back to bed in one piece and was obviously tired from the adventure. Nevertheless Ethan Jr. helped her to color a little with markers and to play with a balloon.

Having not seen her for a few days I have to say she looks good, but VERY tired. Her voice is much higher and squeaky and makes her sound even cuter. She kept saying thank you to the kids for the toys they brought. It was heartbreaking to hear her exhausted squeaky voice straining to give thanks.

Teri said it was the most she had talked and certainly the first time she had smiled. All in all a good trip despite the traffic and storms on the way up.

The kids are now over at the Ronald McDonald House which they have been excited for since this adventure started. Then Teri and the kids are heading over to the Buchmann’s for some swimming and for Teri to get some much needed fresh air.

So far her chest tubes seem to be really slowing down, only around 10cc over the last few hours. This is great and we could be on schedule to get them out in the next couple of days. Her central line came out right before we got here, so there is major progress towards her becoming wireless. The faster these lines and tubes get out, the better. Each one is just a doorway for infection.

I grabbed a quick video of Gabi playing with her balloon. I hope everybody has a great weekend.

-Ethan

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Catching up on rest

Last night was fairly uneventful, which is great. She did throw up a bit and it was dark brown like old blood. They contributed it to just post-op crap but she had been drinking a little water and juice and even eaten a few bits of pudding and apple sauce so theyk reassessed after she threw up a few more times and contributed it to the pain med she is on called tetr…something. So they took her off that so since about 11 last night she hasn’t had anything for pain  and she is sleeping very comfortably. She wakes up every hour or so, makes sure I am there, watches a little go Diego go and then goes back to sleep. She is calm and catching up on some much needed rest. I can’t believe she is not on any pain meds., I would be miserable.  But sometimes the side effects are worse. They have morphine and lorazepam on hand for her but from here on out, I think I will just push for ibuprofen and Tylenol. Those narcotics are just not worth it.  And from all of her hospitalizations, her dose of morphine wouldprobably make my heart stop. That’s what the nurse said. Her little body is so tolerant of morphine that to take any effect, the dose they would give her would be almost 5 times the amount given to me- crazy.  She’s going to seriously go broke quickly if she ever becomes a drug addict. (terrible joke, I know).

In my amateur doctor opinion, her heart rate is elevated and she is breathing fast, so I think she needs some additional volume… Albumin or FFP. We’ll see if I am right. I just mentioned my thought to the fellow … Iam sure they are 100 steps ahead of me :) but she is draining so much fluid/blood, I think she needs some of that replaced.

Chest tubes are not coming out. She looks ok… Not great, not terrible. Her feeds were started very slowly last night and so far no chyllous!!! Please continue that specific prayer! They haven’t rounded yet.

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Overnight plan

Today was very quiet. Gabi actually was a lot calmer and got some much needed rest. And when the docs start leaving her alone, I know that is a very good sign:)

They are going to start feeding her a low fat formula at a very low rate via g tube overnight. They are going to cut the milrinone in half and start her back on her normal cardiac oral meds. If that  goes well, the milrinone drip will be off by early morning and her central line can come out soon after.  Unfortunately her chest tube output is still too high for even considering those to come out yet.

Baby steps forward. They all think she looks good. Chest X-ray is at 6 to make sure nothing in her lung has collapsed.

We both took a few naps today so I actually feel human now. Plan is for the kids to come visit her tomorrow at some point. I was hoping the horrific chest tubes would be out but no such luck. She will be excited to see her brothersand sister. We are so thankful gabi is still here and making good progress.

Thanks so much for all the prayers… No chyllous!

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Great news

She peed and the pacers are out!!

After 8 hours of no pee,The docs werethinking about doing a straight cath (inserting a catheter into her urethra to get to her bladder- very uncomfortable ) but the nurse and I asked them to please wait for another dose of lasix and sure enough she had 2 full diapers in the folowing couple of hours.

So- about every 25 minutes a doc or 2 would come in and play with the pacer wires trying to get them at a good setting.  Her rythym was all over the board.  At about 10 pm, dr. Hehir came in to play and I could even see the wave lengths on the monitor were totally messed up. He decided to just turn it off and see what happens.  Wouldn’t you know it, her heart loved it and the rhythm evened out in a matter of minutes. He stood watching and said… Look at that, she’s sinus.  Hmmm…  I know he wasn’t talking about her sinuses in her nose; I apparently  looked puzzled so he said, that’s good… That’s perfect rhythm. The pacers have been off since and she is doing great!  The prayers certainly worked! Thank you!

Her chest tubes are still draining a lot so all 4 are staying in.  Bummer.They are also keeping her on the milrinone (an IV heart med) so this means her central line has to stay in too. No lines coming out today. Another bummer.

She has been eating a little orally but they will start some g tubes feeds  later today. One of the things that keeps the kids in the hospital for a long time is when they do start eating, their body does not absorb fat and it leaks out through their chest tubes… It is a white milky substance that is called chyllous. This could keep gabi in the hospitsl for weeks… So my new prayer request is for no chyllous. I would so appreciate it.

She is still super restless and afraid to sleep because so many people come to bug her with blood pressure, blood draws so she is always on the defense. I did get to crawl in bed with her last night and this morning so I think she feels a little safer. Neither of us got much sleep.

Overall, she is doing awesome. My little rock star!

Thanks for all the support!

Side note- ethan likes to take random pictures when he is downtown, so I have no idea what those 2 pictures are to the right. I love you Ethan but this is supposed to be about gabi! :)

Love,

Teri

 

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Pacer problems and pee

Just when we’re so happy with progress, there’s always a kick in the gut. Dr. Singh cam in to play with the pacer wires and he asked me how much I understood about what was going on with her heart. He went into a long explanation with diagrams about the pacers that gabi needs right now. He said the problem she is having is with the bottom ventricle. The top chamber is beating and the bottom chamber just isn’t responding, so the pacer jump starts it to force it to beat.He said there is an AV node that is in the middle of the chambers and its job is to communicate between the chambers. Sometimes  during the fontan, this AV node can get damaged…usually it recovers and doesn’t become a problem.  I asked him why he was explaining this to me… Because when an ICU doctor takes time to explain something, it’s a bit worrisome. He answered by explaining that The setting that is on the pacer right now for gabi is at the highest rate , much higher than “normal” so they are concerned. He said not to even think about a pacemaker until day 7 post op. this is day 2. And this sucks.

And of course, they removed the foley and now she is not peeing. She hasn’t peed in 6 hours and she has received 2 doses of diaretics.

Please please pray specifically for pee and for that AV node to start working properly.

Thanks,

Teri

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3 celebrations

The dex is off, the art line is out and the foley is out!  I sat in dr. Rao’s thinking chair for a while and realized i was uncomfortable with the dex being back on. gabi just wasn’t moving forward being on the drug. Dr. Cava and dr. Hehir both kind of gave me permission to make decisions as far as pain meds.  I talked with our nurse and Dr. Hehir came in and we all agreed the dex was counterproductive.  Being on the dex slowed her breathing effecting her O2 levels, effected her heart rhythm, and made her totally whacked out. Even being back on the dex, she was still trying to sit up, disoriented and just pissed. So, we all agreed to just turn the sucker off and deal with the aftermath of this awful drug and the post anesthesia. This would at least allow her to make some progress in healing.  So, we turned it off and after about 20 minutes it took 4 of us to hold her down while she was flailing and trying to pull all of her lines out. It was crazy, irrational and quite scary.

Her heart has done well without the epi so while the nurses and I had her pinned down, we were able  to remove the art line and she was peeing fine so they took out her foley as well :)

Her heart  is still being paced but they are hoping as the dex wears off, her heart’s 2 chambers will communicate better and the wenckebach will go away. right now, the atrium and the ventricle are not communicating very well. They are missing beats and just not in sync.

She is resting peacefully right now because they giver her a dose of atavan to take the edge off.  Please pray that when she wakes up, she is back to her normal gabi self. Making progress.

Melissa- I did ask if she was given any steroids and they assured me they hadn’t given her anything. I wonder if Caden’s reaction was a combo of the drugs like gabi’s??… Just speculating.

Love,

Teri

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Epi off take 2

Let’s try this agsin, they have turned the epi off again and so far so good.  She is still being paced, which helps Ithink. We also tried turning off the dex again and that didn’t go so well. It was off for about an hour and she went  crazy. Pulling at the wires pointing at the door saying I wanna go, I wanna go mommy. She was thrashing in her bed and turning over. With  4 chest tubes, a fresh chest incision, a central line, 2 peripheral IV’s , an art line, a foley, leads, a renal patch and her g tube- she got terribly twisted up and we Were afraid she was going to hurt herself. So the dex went back on at an even higher rate.

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Drop in heart rate

SooN after they turned the epi off, her heart rate dropped significantly to about 65. The alarms went off and 3 docs were at our bedside. They turned the pacer wires back on and also had to turn the epi drip back on. I asked how concerning this was and Dr. Hehir explained that of course they would not like to use the pacers but  it’s  necessary  to maintain good cardiac output to get the drainage under control. So this could be a long term problem which would mean gabi getting a pacemaker, but it is probably her body getting used to the new fontan anatomy so generally thiese rhythm issues get under control by themselves.

She is still on the dex  but, the nurse, Andrea, and i can wean that down as we see  fit.   We gave her a dose of  Tylenol and wouldn’t you know it, she is resting comfortably right now.  Could be just coincidence and luck, but I’ll take it.

One step forward, 2 steps back.  Seems to be gabi’s style.

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Decent night

“mommy I wanna go. I wanna go” this is what Gabi was saying repeatedly last night in her half sedated stupor. it was so sad. She would reach for me and wrap her arms around and neck and try to pull herself out of bed.  It is heartbreaking.  She would finally settle after a long few minutes and settle for playing with my hair.  She is stiDevon the dex drip at .7 which is a lot but they aren’t too concerned. We aren’t even 48 post op yet.  Our nurse kennedi last night was great.  Sometimes the nurses will dump the prn pain meds (like morphine, versed and droperidole) into her. I think our friend Caden a few weeks ago receivedover 10 doses of morphine in one night. Kennedi worked together to calm her before giving her anything.  She received one dose of droperidole when she literslly tried to get ot of bed.

The docs just turned off the epi and the norepi so that is good. That means we are starting tomeasure her intake of any fluid and hopefully some food. She was being paced all night but they just turned that off and her rhythm  is holding steady. Her chest tubes are still draining a lot so Tim, the PA, said those are no where near coming out.

They should round soon. Baby steps towards progress. I am certainly not as scared for her survival anymore, I just want her to be comfortable… So thanks be to god for that!

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New sedation plan

I remember this sedation game all too well. One step forward, 2 back.  Later in the day, gabi was waking up and was completely irrational and thrashing around.  It was almost impossible to console her.  She was trying to rip out all of her lines and rip the cannula off her face.  She just kept saying more water or more ice even though she was holding the cup with both in it.  They said coming off all of the drugs can make the kids confused and irrational. They turned off the dex and she became more upset so they then turned it back on at a higher rate a few hours later. She was receiving periodic doses of morphine and versed as needed but they decided that sometimes that combo can cause anxiety so they are going to give her something else… I forgot the name right now. they will also keep her on the dex.  They need her to be awake enough to breathe well and to drain off the fluid but sedated enough to keep her comfortable.

Earlier today, she was sucking on a sponge the nurses use to wash ou patients’ mouths. She would dip it in water and suck on it.  That progressed into taking sips from a sippy cup and then she became fixated on the cup. Poor girl.  It is so hard to see her like this. She was saying ” mommy, I want you” over and over and I can’t pick her up. It’s awful.

Dr. Hoffman, the chief anesthiologist and critical care doctor stood over her bedside this evening for an hour deciding what to do for her.  Her sats were lower than they wanted, her chest tube output is still high and she is upset.  Her put her back on the pacer to see if he could help her heart beat more efficiently and evenly. Right now, she is resting and her sats are at 90.

So I think she is doing ok. When I ask the docs ify she is doing ok, they hesitantly nod their head.  I would really like to see a confident nod soon…

 

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Pacer wires

Gabi has had a busy morning. Her heart rate was jumping around so they paced her for a couple of hours.  With her fever and all the meds she is on, her heart rate was high and irregular.  It was hanging at about 170 beats when it should be around 110. Her fever is now down and her heart rate without being paced is back down to 114. Good progress. The upper chamber and her lower chamber are not in sync so the pacer wires are sitting on the bed ready to be used, just in case. There is a term for this that we learned, an actual condition called wenckebach.

They weaned down the dex (the sedation drug) to about half so she will def. start to wake up a lot more. She is still generating a lot of fluid out of her chest tubes… More than usual, but then again, there is no real “usual.”

She is on a lot of oxygen and high flow pressure but this is to be expected. Her sats are running around 85, right where they want them. It’s interesting with the fontan anatomy is that they used to want the kids sats to be in the high 90′s but this was leading to poor cardiac output and putting strain on the liver and kidneys. Now they put a pop off hole in the gortex  material where they elongate the inferior vena cava and attach it to the pulmonary artery. This hole, they call it a fenestration, is used to relieve pressure. So they sacrifice higher sats for better cardiac output this way. Dr. Tweddell literalily during the surgery decides how large this hole should be depending on the kid. Gabi’s fenestration is 4 mm in diameter.  In her future, they may need to close this hole via a cath or surgery. Or the hole will be just perfect for her and they can leave it alone.  Time will tell.

Overall, she is making progress but just in baby steps. We are so happyand grateful.

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Extubated!

She is extubated!  Yippee!  So wonderful to get that nasty tube out and hear her hoarse, scratchy voice.  She is still on a lot of breathing support with an oxygen canula but so far she is breathing wonderfully on her own. Plan for today is to try and wean down her sedation and start to wean her off the inotrobes (intravenous heart meds). They won’t start feeding her (through the G tube) until those inotrobes are way down and hopefully off.  The next big hurdle is to play the balancing game of keeping her sedated enough to be comfortable yet awake enough so she can move that fluid off. She hasn’t needed the pacer wires and she still has an art line to maintain her blood pressure.

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Rough first night of recovery

When Dr. Tweddell, our world renown surgeon, is in your room for a good portion of the night… that is not a good sign.  He usually pops his head in nods and walks on.  He is a very calm man with little words.  Last night, he was on his toes. Gabi was bleeding an extradorinarily a lot so they gave her platelets, FFP, and chryo (a form of platelets)- all to increase clotting.  Then all of the bleeding almost stopped.  Which sounds good, but then it is a matter of did the bleeding really stop or is it just not draining… questioning where or not there might be a clot blocking the draining.  Our friend, Caden, a few weeks ago was rushed back to the OR for this reason.  They took a chest x-ray and didn’t see anything. Her O2 sats dropped significantly into the 60′s and 70′s and her renal sats dropped also. The team decided to wait and see what she shows us.  They then gave her albumin which always helps her numbers and that did the trick. Her numbers increased and they all took a breath.

She woke up several times last night and was thrashing around terribly confused.  It was awful.  Because of the breathing tube, she has no voice and I could see her mouth “mommy” but she was confused and pissed.  They knocked her out to keep her quiet for a lot of the night.  This morning at 6:30 am she popped her eyes open and was much more coherent. She looked at me with panic in her eyes but didn’t thrash around.  She reached for my hand while trying to cry and say mommy.  That silent voice is  so heartbreaking.

Ethan and I both held a hand of hers and she wouldn’t let go.  They gave her another dose of versed to keep her quiet but the next time she stirs, they are going to try and remove the breathing tube.  This would be huge!!

She also spiked a fever in the middle of the night and they said this is probably normal post-op. SOmtimes on bypass, the tissue gets irritated and reacts with a fever.  Not alarming yet.

Please pray that the extubation goes well and she can fully breathe on her own!

Thanks… all our love,

Teri

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Platelets

Not much going on. She is still very sedated and resting. She is bleedingand draining a lot of fluid out of her chest tubes so they are giving her platelets to replenish what she has lost and also to help stop the bleeding. Baby steps.

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Fontan complete!

We are back with Gabi in her room! The surgery is complete.  We talked with Dr. Russell and Dr. Nancy along with the anesthiologist and they all agreed that she just needs a little rest and then they will let her wake up so they can try extubating again.  This may happen tonight or tomorrow morning.

We are surrounded by familiar faces- nurses, doctors and resp. therapies. It’s nice to walk in and instantly trust those caring for Gabi.

Our nurse, Ann, told us that Gabi woke up a bit before we were in the room and she was pissed. She was trying to pull the tube out, so they have her pretty sedated right now.  She is on several heart meds, blood pressure meds and lasix to help her pee off the fluid. When we got in the room, I bent over to whisper in her ear that she did a great job and that we love her. I squeezed her hand and she moved her other hand telling me she heard me.  I know she’ll be ok. It’s going to be a balance game of not too much sedation but also not letting her get too agitated.  Once she is extubated, then we’ll worry about those nasty chest tubes.  We’ll take some pictures soon. All her numbers look good so we are relieved and happy. She is resting comfortably.

She is in room 306. Thanks for all the prayers and words of encouragement.  We are so very tired and the fight has really just begun.

One of the hardest things about being here is seeing other sick kids. We saw a little boy today with his parents unloading his car at the valet. He had lost al of this hair and his dad was carrying him.  They had lots of luggage with them and we assumed they were headed for a long stay.  Everyone’s path is unique in this life, everyone has a story, everyone has pain and that pain cannot be compared.  We are so very grateful Gabi is still with us and she is fighting!!

Love,

Teri

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Fontan #7

They tried to extubate gabi but she just wasn’t breathing that well on her own so they had to put the breathing tube back in.  They said it may be hours or not until tomorrow  morning until they try again. They had to increase a few of her meds to increase her blood pressure and as expected she is on cardiac meds to keep her heart pumping – epi and milrinone.  Her blood pressure was dropping but they say this is because they had to sedate her more because of the breathing tube. All in gods time.  We got to see her quickly as they wheeled her out of the OR. She is now in her room where the team will get her settled.  It will be another hour before we can see her.

You keep fighting my little gabi… My baby girl.

 

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Fontan #6

She is almost done! The bleeding has stopped enough where they have closed her chest with sternum wires and then were able to we sew the layers of skin. Next step is to  let her wake up just enough to extubate. This will be huge!  Every surgery that she has endured she has trouble when they take the breathing tube out.

We get to see her for just a second as they wheel her to her room in West 3, the CICU (cardiac intensive care unit).  I can’t wait to see her!  Ethan is more nervous… I am jumping out of my skin in delirious  exhaustion .

We haven’t gotten a room at the Ronald McDonald house so Ethan may head home or may stay with a friend.  At least one of us needs to get sleep. I will stay with gabi in her room.  Our oldest son, Ethan jr., has his championship baseball game tonight.  Unfortunately he is sick and can’t play but he will sit and watch cheering his team on for a little it. One of the hardest things about this is trying to be there for the older kids.  He is so worried  about gabi and i knows he needs us too.  And in his world, this championship game is so important to him and we have to respect him for that. It kills me that I can’t be there to celebrate with him.

But it is just baseball and all about perspective.  The next time I post, it will hopefully be from gabi’s room!

Much much love. And all the support you all have given us is so appreciated.  We are so blessed and so grateful.

Teri

 

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Fontan #5

She is off bypass and doing great! Next step is to control the bleeding and sew her back up. She may bleed for another hour or so but her heart kicked in after they turned down the bypass.  I was so afraid that her heart wouldn’t start back up. That is what happened in her first surgery and she was on life support for 3 days.  But that is not the case!!  She is kickin some butt in there! I feel like I can take a deep breath…

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Fontan update 4

She is still on bypass. They have finishing tightening up the tricuspid valve and are working on the fontan procedure.  Hopefully the bleeding will be under control and they can start warming her heart back up and take her off bypass.  Hopefully this will go smoothly.

So far so good :)

Dr. Cava, oua cardiologist just stopped by and said that gabi will be slightly awake even before leaving the OR. He assured us that the next 48 hours will be very rough.

 

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Update # 3

The nurse clinician just came out to give us an update.  They are done getting through the scar tissue and will be putting her on the heart/lung machine (bypass) in about 10 minutes.  They are going to repair her AV regurgitation (sp?) first and then move on to the fontan.  The regurgitation is a problem she has had from the beginning.  It’s kind of like a backwash of blood into the heart. He will fix this by putting in a few stitches.  The fontan procedure involves disconnecting the Inferior vena cava from the heart and reconnecting it to the Pulmonary Artery.  They will use a gortex material to make a new pathway for this to be possible.  They also make a hole to use as kind of a blow hole to relieve some of the pressure in the inferior vena cava.  They may need to close that in later months/years or it may close on its own or it will stay open and be the perfect size for Gabi.

She has tolerated everything very well so far.  Her vitals are looking good so we are thrilled with this news so far.

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Starting

They have started to work there way through the scar tissue. This will take a couple of hours, then the provider really gets started. So far she is doing well.

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Fontan update #1


Having a little fun while waiting to be admitted.

They just took her.  As we were talking to the anesthiologist and nurses, gabi threw up as she was getting upset.  It was awful. I felt my stomach churning also and my eyes sting with tear.  They gave her a dose of versed,which likes her loopy, thank goodness.We just spoke with dr. Tweddell’s nurse clinician and she will update us every hour. She said the breathing tube is in and she in asleep.  They are starting to put in all of the lines : a few peripheral IV’s and a central line in her neck. We are waiting to speak with Dr. Tweddell…

I feel like my heart has been ripped out.  We are scared but know that she in great hands… Literally in our wonderful surgeon’s hands and also in God’s hands.  Please pray for the whole team that is caring for gabi’s heart.

Thanks for all of the texts and emails and wall posts this morning. Even though we haven’t responded to them all, we appreciate each thought and prayer!

Much love,

Teri

 

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Popsicles!

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Back Into Battle

Gabi had her pre-op on Friday July 6th. I must say usually it is very comforting for us to be at the CHW because when we are there Gabi is sick or in crisis mode so she needs immediate help. This time, she is doing so great and almost like a normal kid.  To hand her over to the docs when she is doing so great is making me sick. We met with Mike, one of the WONDERFUL PA’s there and he walked us through what is going to happen on Monday.  Most of which we already knew.  He walked us through the risks and possible side effects. He walked us through the post op and the long term care.

I have been told what the fontan is several times, but have completely forgotten and don’t really understand the details.  Honestly, sometimes I don’t want/need to know.  I trust Dr. Tweddell and his team so much that I can honestly just say… I trust you, please take care of her.

Gabi had an EKG, chest x-ray, labs drawn and a physical exam. She did great!  Labs weren’t so hot, it took them 3 tries to get the blood they needed. But she was a trooper.

Ethan Jr and Thomas have both had a respiratory virus this past week and I am totally freaking out that Gabi is going to catch it.  I am supposed to call Mike right away if she has any symptoms.  Most likely, the surgery would be postponed for a few months if she does get sick. This would suck.

A few pics from the pre-op.

Just seeing what’s in this cabinet… no biggie

Her puppy dog from Grandma.

EKG

We will post throughout the day Monday… the day of surgery. She is scheduled for first case… 8:30 am with Dr. Tweddell. Please pray for my baby!

Thank you and much love,

Teri

 

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Cath complete!

Gabi was in recovery by about 4:30. I spoke with carol (cards nurse), Kate (cath nurse), Dr. Cava and Dr. Forester after the procedure and they all agreed her pressuresa looked great! They all agreed that she could proceed with the fontan. If her numbers were too high, they probably all would like to discuss getting on the transplantlist.  But that is not the case!  Alleluia.

Dr. F saw one artery in her right shoulder that needed to be coiled off so she proceeded with that. Dr. Cava didn’t want to mess with anything else… He explained they can finish all those necessary tune ups during the fontan in July.

She is resting now and I am trying to keep her still.  They insert the catheter into the main artery at the top of the leg and if it doesn’t stay still for a few hours there cold be a lot of bleeding.  But she is handling it well.

They all say will be getting out of here tonight… Hopefully around 8:30 or 9:00. Its been a long day but I am SO thankful this is over and that we got great results!

Thanks be to God!

 

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Going great

Jusa update update. Gabi is doing really great.  They have measured pressures and now they are  taking some pictures that Dr. Tweddle needs to prepare for her surgery.  So far they haven’t needed to intubate her, which is great news!  They may need to coil off some of the collaterols which is expected.  All in all it’s going smoothly!

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Cath underway

They just took her back to the cath lab.  The anesthesiologist gave her a dose of versed so she was hilariously drugged before she left me. I looked into her dilated pupils and  gave her a kiss on the cheek. she smiled as our nurse and good friend, Kate, wheeled her away to Dr. Forester. The procedure should take about 2 hours unless they find something significant that needs to be repaired. Then it will be longer. Kate should update me in about an hour.

Please God, be with my baby girl.

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Heart cath today

The cath is today.  We got to CHW this morning at 9 am but the cath lab is delayed so we are waiting…Gabi is doing ok, but but they won’t let me feed her, so that makes it not fun.  I’ll post as soon as I know anything.

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Fontan Scheduled

Hello all. Gabi had kind of a rough late winter/spring. She suffered from bronchiolitis and then another bad cold/cough. She landed herself in the hospital for a couple of weeks total. No fun for logistics. But she recovered fully and is doing so great!!

Gabi continues to blow our minds as far as her development and her sense of humor. She is walking faster and does her darndest to keep up with all the kids. It is difficult to even think about handing her over to Dr. Tweddle. The thought of him opening her up again makes me sick.

Dr. Cava initially wanted to hold off her fontan until late summer but her endurance is just terrible. I would say that she can walk maybe 20 steps without getting winded and turning blue. Literally, her hose turns blue and her face gets dusky. She sometimes tries to fight through it as she desperately wants to keep up with her siblings and neighborhood friends. But she just can’t. We need to pick her up and give her a rest.

With that said, Dr. Cava and team agreed that she needs the fontan surgery sooner rather than later. Of course, Dr. Tweddle is booked until July. But if he gets a cancelation, it may be sooner. So, the cath will be May 8th and right now her surgery is scheduled for July 9th.

My brother, Tim, is getting married August 11th in Telluride, CO. I mentioned to Dr. Cava that we were considering taking the family, including Gabi and I wanted to get his thoughts as far as how altitude and oxygen levels would affect her.

He smiled and said she could not go. The lack of oxygen and less gravity to help her blood flow would just not be conducive for her at this stage. Now that her surgery is scheduled for July 9th, there is no way she would be able to go. Sorry Tim.

Her cath, scheduled for May 8th, is when they will go in through her neck and groin to take measures of pressures and take pictures of everything they need to know for the surgery.  They are fairly certain her body has developed collaterols. These are those pesky new routes her body has formed for the blood to flow.  These are taking the blood in the wrong directions, so they will coil any of these off during the cath.

She also has a dentist appt scheduled for May 31st.  The docs have to be certain she does not have any cavities before her surgery.  Any decay in a tooth leads directly to the heart which could cause a serious infection.

Gabi is in the process of getting evaluated by our school district.  She has an IEP meeting scheduled for May 18th.  The school nurse has called several times to make sure they haven’t missed any medical issues. lol.  The district is purchasing a pulseox and new AEDs (automated external defibrillator) for each school. I assume they probably needed a good reason to purchase this equipment… enter Gabi.  She will qualify for PT, OT and speech through the district.  Right now, she receives therapies through a private facility and through EI (Early Intervention).

That’s about it for now.  Max has a minor procedure for hypospadia and chordee on his wiener this Monday. April 30th, so we are quite busy.  A few prayers for all of us as we endure all of these procedures would be really appreciated.

I hope everyone is enjoying their Spring!

Love,
Teri

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Status Quo

All is well here.  Just a quick post to say that Gabi is doing well. She landed in the hospital for a week with RSV a few weeks back, but she has recovered fully!  Her endurance and eating are still major issues.  She gets winded just walking down the hall and she is still 100% dependent on the feeding tube.  But she is growing and getting stronger.  Dr. Cava says her Fontan procedure will be late summer 2012.

A few pictures.  Max was born 9/26 and is perfectly healthy.  He does have some minor issues with his male private parts but one quick surgery in April and all will be fine.  Happy Valentines Day!

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Gabi’s check up appt 6/27

Hi all,

Cruising along through summer.  Hope everyone is enjoying the warmer weather :)

Gabi had her check up appt in Milwuakee on Monday the 27th.  We now see Dr. Cava, since our beloved Dr. Rao moved to Phoenix.  We know Dr. Cava well from Gabi’s hospital stays.  He hadn’t seen Gabi in clinic in over a year and he admittted he was quite alarmed with the lingering fluid around her heart, the size of her heart and the “leaky valve” issue.  At first glance he thought, these issues seemed to be much more severe than he remembered.  However, when he compared the results to her previous history, he was put at ease a bit because the results are pretty much the same.

The leaky valve (tricuspid regurgation) can be repaired during the next surgical procedure, the fontan.  The fluid around her heart is not normal. His only thought was that she lacked enough proteins in her diet.  In her lab work, he ran an albumin test to see if she was low on protein.  If a body is low on protein, fluid can accumulate anywhere in the body.  I remember when she was fresh out of surgery and looking bloated, they would give her albumin and she perked right up.  The lab results show that her levels are normal.

He recommended that we wait for the fontan until next spring/early summer.  But he does want Gabi to go into the cath lab (catheterization laboratory) in the winter. This is where they will insert a catheter inside the artery via her groin and be able to go up into her heart to repair necessary things.  This can also measure arterial pressures and obtain great information.  Her O2 sats were really high, at 89-90.  Sounds great, right?  Not so much.  This means  her body is forming collaterols, new pathways to and from the heart.  The blood is developing these tiny little pathways to where it’s not supposed to go.  During the cath procedure, they will coil these off.

They need her to get bigger and stronger before the next surgery and she does have plenty of time but basically the eating thing needs to improve.  She is 100% on a liquid diet of pediasure that she gets via g tube.  She tries and loves to eat, but can’t swallow.  If the food goes back into the back of her throat, she gags and throws up.  There is a 2 week inpatient feeding clinic that we are considering.

It’s always a realty check when we have an appt.  We treat her like a normal kid and she tries to just keep up with everyone.  I never forget about her troubles, but we try to lead as normal a life as we can.  And then to hear the severity of her conditions always makes me shed a tear. However, she is with us and smiling everyday!  And for everyday, we are grateful to have our wonderful Gabrielle!

Love,

Teri

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Long winter

Wow.  I didn’t realize how long it had been since I last posted. So sorry.

It has been a long winter but even the vey few days of sunshine have showed me that we survived and will carry on… what choice do we have?

Gabi is doing OK.  In late January, early February, all the kids and myself tested positive for Influenza B.  Fevers at 104, breathing problems… scary stuff.  The kids were out for weeks at a time. Luckily, we were able to get Gabi on tamiflu really early on and she gets synergis vaccinations for RSV.  Between those 2 preventative treatments, we managed to keep Gabi out of the hospital.  Thank goodness. She has had a cold off and on since then and her sats continue to be low… around 77.  Ideally, they should be mid 80′s.  We are watching her closely.  She had a check up appt at CHW with Dr. Rao and he wants us to call  in her sats on a weekly basis.  Unfortuanetly, whenever she is congested, she doesn’t tolerate her feeds well, so her weight is only maintaining, not gaining.  But they are OK with this so far.  She is not loosing and hangs at about 5% of the weight scale.  The fact that she is ON the scale with “normal” children is fantastic, so they are keeping the perspective.

She is happy, and getting around like all toddlers.  In the toilet, escaping through the open front door, climbing on the open dishwasher door… you know, the usual things :) She continues to struggle with walking but she is getting so much stronger.  The eating is still our biggest battle.  The past few months have really set us back as far as any calories being counted orally.  All her feeds continue to  be through her G tube.

On top of the flu in late January, I was incredibly sick.  Incredibly sick with morning sickness… all day sickness for me.  Yes, we are expecting #5 !! Our emotions have gone from: devastation, denial, depression, anger, back to disbelief, shame, embaressment, and we are finally moving into acceptance and excitement.  I am due Sept 30. On May 13th, we have the ultrasound to find out the sex and they will also do a full fetal Echo and level II exam.

Gabi’s next appt is in June and they are planning on doing an echo of her heart.  The results of this, along with the series of sat reports will help them determine the timing of the next surgery.  The fontan can be done anywhere from 2 1/2 years old on up.  There is no benefit for waiting until the kids are older.  She will be 2 this June, so her next heart surgery could be as early as next winter.

I hope everyone survived this brutal winter and is looking forward to summer.  I know I am.

Thanks for reading.

Love,

Teri

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Second weight check

Gabi had her second weekly weight check at her pediatrician and she gained, drum roll pleez…. a whole pound!!  One pound in one week!  Of course, this now could be too much weight.  There are 453.59 grams in a pound, which means she gained almost 65 grams a day.  The ultimate goal is for her to gain 10 grams a day.  BUT, if they have to tweek her food intake, I so don’t care.  This just confirms that they didn’t miss anything related to her cardiac function and it will prevent the docs from doing any further tests to see why she wasn’t gaining weight.  They were thinking possible celiac disease or crohns disease.  But with this success, they will rule those out! And she even has a cold and she was throwing up more often because of the mucous… I was really worried.

Gabi is our Christmas miracle!  I am finally able to look at her and not see a sick child. For the past 18 months of her life, I would concentrate on memorizing her face and her movements and her expressions and her babbling.  I wasn’t sure how much time we were going to have with her and that’s all I could think of. And the thought of her ever forgetting how she smelled or the sound of her laughter was just too much to bear.  Yes, I have accepted that she may live a short life but that doesn’t make it any easier.  I make certain her quality of life was the best I could possibly give her.  If this was her short life, I wanted her to experience happiness and love and nothing else!  I know that is impossible, but it was my goal.  I thought for a long time of quitting the therapies because I thought who cares if she isn’t strong enough to crawl… I didn’t care if she was “low tone”. It is so natural to plan for the future whether it be in many years or just a few months, but with a sick loved one, to enjoy the moment and enjoy every day is the goal… Gabi is our Christmas miracle and she brings unbelievable blessings to our home…

I truly hope everyone has a wonderfully blessed Christmas season and a Happy Happy New Year! And I pray everyone can find a Christmas miracle in their home, because there always is one. Sometimes you just have to adjust how you view something or someone.

With  much love and relief,
Teri

This is at Arlington Pediatric Therapy. Gabi and Ethan Jr. receive therapy there and this was their annual Christmas party. It was very cute.

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Doing great!

Just wanted to let everyone know Gabi is doing great! We go in for a weight check on Friday and I will let you know what her current weight is.  She is getting better at eating orally, but we still can’t count any of the calories from food because most of it just drools out.  Sheila, our speech therapist explained that she holds it in the front of her mouth because she doesn’t have the strength or the coordination to move the food to the back of her mouth to be able to swallow it. It is a mess when she “eats!”

I hope everyone has a wonderful Holiday Season and a very Merry Christmas!

These are pics from her most recent hospital stay!
Love,

Teri

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Heading home

Gabi is doing great and we are headed home! Just waiting for paperwork and to schedule follow ups. They upped her food intake and we will get weekly weigh INS at our pediatrician. If she doesn’t gain weight from this, they will run more tests for things like celiac disease. My instinct telling me she is just fine and just needs to get more calories.

Thanks for all the prayers and well wishes. And thank you to our wonderful neighbors for all the help with babysitting and driving! We are so blessed.
Love,
Teri

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We are here and waiting for the docs to make any decisions. The one decision they have decided to do is to increase her feeds by 10%. They are going to keep her tonight and if i push hard enough, they will throw us out tomorrow.

Her BNP is down to 88!!!! Unbelievable. Amazing. This means she is most definitely not in heart failure. However, her heart does work hard so she needs more calories than an average kid, so we just need to feed her more.

We are so thrilled.
Love,
Teri

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Not so great check up

Gabi had a cardiology check up this morning and she continues to loose weight, so they are going to admit her for a few days.  She is already taking in more calories than a “normal” child because her heart works a lot harder than a healthy one and therefore burns more energy, hence needing more calories…. (enough adverbs for you?). They need to figure out why and where she is burning extra calories. Of course, the biggest concern is her heart failing.

She has been doing so great for the past few months and hopefully they can find the right feed plan for her, but in the meantime, this sucks.  She is so happy crawling around the floor exploring and playing with her brothers and sister. I can’t imagine how difficult this is going to be having her confined to a hospital room.

Hope everyone had a wonderful Thanksgiving!

love,

Teri

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BNP #

The BNP test is a heart failure blood test. It measures the level of a hormone in your blood called B-type Natriuretic Peptide. Your heart’s pumping chambers – the ventricles – produce extra BNP when they can’t pump enough blood to meet your body’s needs. So if your BNP level is high, you probably have heart failure. The higher your BNP level is at diagnosis, the worse your heart failure is likely to be.

I just talked to Dr. Rao. Gabi’s BNP number is 178… the lowest it has ever been!!!! We are just thrilled.  Her weight loss is def. due to needing more calories rather than complete heart failure.  Thank goodness!

Just for a reference, we have an HLHS friend’s BNP number has been as low as the teens.  Another HLHS friend that is on the transplant list is in the thousands.

Gabi has been as high as 1000 before her Glenn surgery about a year ago today.  A “normal” healthy person with 4 chambers would have a BNP of zero.

“When there is no struggle, there is no strength.”

Love,
Teri

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Home Sweet Home

We got home last night late dinner hour and I am exhausted!  Gabi is doing great!  We may not have had to go to the hospital anyway but better safe than sorry. Sleeping in that hospital room with an unsure baby, beeping round the clock, nurses coming in to check every hour (Yeah, I went ahead and told her through the night every 4 hours was OK).  She was a slightly new nurse and was a little shocked at my forwardness, but my usual favs would have known to not bother a “mildly” sick child every hour… even despite the docs orders!

Anywhoo- Gabi is once again doing great.

Here is the shortened version.  After throwing up blood in the car at Marissa’s trip, I had to zoom home while calling the docs. When I got home with the kids, there was A LOT of frank blood (bright red blood) coming out her G tube extension. I stopped her food and got back on the phone. First with our awesomest pediatrician NP that walked me through exactly what to do.  I was talking to the nurses from the GI dept up in Milwaukee and lets just leave it at I wasn’t too thrilled with their response.  I went around them and paged cardiology (Dr. Rao) and we all decided it would be best for her to be seen up in Milwaukee, which is what I had assumed.

Usually I am by myself, but I was lucky to have company this time with Colleen.  She was in the back with Gabi in case of more blood pukes. When we go to the ER all was smooth in the beginning.  Then it got exciting.  Gabi was fine but the decisions or lack thereof were none too great.

We got there at around 2:30ish pm and we were in the ER room until almost 11 pm.  With a “normal” kid, this is pretty expected but with a kid like Gabi there is no excuse.  They knew they were going to admit her but the rules state that a kid is not allowed to go to their room without an IV.  Fine.  I get that but when they try 6 times…. enough!!!  First one nurse tried then another, then they paged the transport team to get one and usually they are REALLY great at IVs (so are the nurses for that matter) but by this time, Gabi had not had fluids since that morning and she is bleeding in her stomach and with her cardiac problems, she becomes dehydrated VERY quickly.  SO- now she is dehydrated which makes veins extremely small.  So, with her already tiny veins, they are that much smaller.  I insisted that we just go to her room where we know all the critical care docs and ICU nurses and they are pros at getting IV’s in… but they wouldn’t let us bypass the ER.  One poor nurse took the brunt of our frustration but then things started to happen. An anesthesia fellow was able to come and successfully get an IV in Gabi’s foot even after a 22 hour service!  We called him magic hands.

So, after the IV was in and after me ALMOST loosing my mind, we got fluids in Gabi and an antacid of sorts to help stop the bleeding was given intravenously.   Thing were starting to look better.   We got our room assignment and after waiting another few hours, we headed up to room 418 where the nurses and docs did their assessment.

Rich and Colleen left by this point and I was still running on adrenaline at this point. I am usually in bed by 9:30 and it was past 11 at this point.  Gabi was exhausted! If I left her side, she freaked out so leaving the room even to go the bathroom was horrible.  Hmmm- I am a little trapped at this point.

She FINALLY fell asleep watching some Jay Leno and I had to run to the car and at least get my change of clothes. Then I realize at midnight… I am starving. I go to Cafe West and get some soup.  The chef recognized me and made me a grilled cheese to go with it.

When I get back up the room, the extra chatty night nurse insisted we get the admission paperwork done with. Usually the nurses are pretty good about filling those out for me and just have me sign the papers, but no not this time.

Question 1: How did you travel here?  Was your child in a carseat? Was the carseat buckled in?

Question 2: What is your child’s daily routine?
Question 3: What are your child’s favorite foods?  What is his/her meal schedule? nap schedule?

I am ready to throw this nurse out the window.

More questions:

If you have a daughter, is she menstruating?
Please describe any previous hospitalizations your child has had?
Please describe any previous pain experiences your child has endured.

What is her reaction to the pain?
What is her reaction to the pain?

IF your child has been hospitalized, how has this affected your family?
How has this affected any siblings?  Do we need to call Child Life for those siblings?
Are you feeling anxious?  Is your child feeling anxious?  Would you like us to call the chaplain for your anxiety?

Do you know what I wrote across the top?  Are you freakin’ kidding me?  Look at her records that you have in your system!! Yes I have a carseat and no I am not afraid for my safety or the safety of my child and No my one year old child is not menstruating!

After I filled out the ungodly paperwork and nurse did not appreciate my bitter sarcasm, the cardiology attending came in and told me the plan of care for Gabi.  They were considering doing an endoscopy to diagnose an ulcer or gastrinal tear but he said the treatment for these would be the same as what they are currently doing so he wanted to avoid any sedation for Gabi and diagnosing her would not help them make decisions.  They were assuming there is some kind of either irritation or ulcer due to the daily aspirin she is on.  They prescribed an antacid for her and she received several doses intravenously.  The bleeding was under control almost immediately.  She is still pooping out quite a bit of blood but she is getting it out her system.

SO- the next morning, after the cardiologist made that decision, I figured we would be out of there in no time.  They needed to feed her and observe her for 2 hours while eating to make sure she could hold down her food. Fine.

She was up all night; we slept off and on for a few hours. By 7 am, I was pushing to get the food started. Then the nurse shift change happened so I had to start pushing with a new nurse.  Don’t get me wrong, the nurses are wonderful!  I have no frustration with them; they are just doing their job.  So our day nurse is finding out if we can start feeds.  She comes back and tells me they are still deciding whether or not to do the endoscope.  I said that that decision had already been made by cardiology and GI together.  Well, this decision didn’t get communicated to the ICU docs. So, the ICU attending said we had to wait for rounds and they were specifically waiting for cardiology to come up from the 3rd floor.  I paged Dr. Rao but he was sleeping.  Nancy was busy in rounds. SO we wait.  We waited until 11:30 in the morning for rounds and I was ready to loose my freaking mind!  Gabi was totally fine and everyone agreed but the docs needed to officially come together and make some decisions! Ugh. AND- I was trapped again so I was hungry!  I texted my dear friend Chris and he brought me a diet coke and pizza!  Thank you so much Chris. Before that, I had brought a care package for another family in on the 3rd floor with pumpkin bread and chocolate covered pretzels.  I tried the pumpkin bread, which I am glad I did because it wasn’t very good….and Gabi loved the chocolate on the pretzels.  Even though the nurse came in and saw chocolate on her face and wasn’t too happy with me.  oops. sorry wolfe family. I ate your care package.

We turned the feeds on immediately and in rounds they did say her hemoglobin numbers from a CBC count were not normal but this could have been due to dehydration.  So they needed to repeat those labs at 3 pm. Dr. Rao also wanted to get a BNP to measure how bad her heart failure is. She had lost about 6 oz and actually her height was .5 inch less. She was loosing weight and shrinking, which obviously were not good to hear.  So, Dr. Rao wanted to make sure she just needed a new nutrition plan and her cardiac function was not worse cuz this can make her loose weight.

Her CBC came back normal y 3:15, she had eaten for 3 hours without one vomit.  I had a new feed plan from our fav nutritionist. The ICU docs wanted to wait until that BNP number came back but I insisted that Dr. Rao could just call me with that number. They said she had to wait,  I paged Dr. Rao he told me we could leave. I love that man.

So we were out the door by 4:30!  Gabi has certainly taught me to be an advocate and that every rule can and should be challenged!  I feel that power the administration has over me and it makes me crazy!  Crazier than usual.

I will call Dr. Rao and get that BNP number today, although he was on service for 220 hours sleeping on and off, and he was going home today to see his family.  If it is urgent, he will call us.  If not I trust him he will call me soon.

thats it for now.  We are home! We are very blessed!  very.

Love,

Teri

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Quick update

So far so good, Gabi is dancing to Hanna Montana in the room.

Blood work looks decent, so hopefully the T & G are back home tomorrow.

Thanks so much for to my mom for riding shotgun, and my dad for driving up and bringing her home. Despite what she claims she doesn’t like the highway.

Call to mom…**RING**

Mom: Hello?

Me: Where are you?

Mom: At home walking out the door.

Me: Gabi is throwing up blood, I need you to come here now. I need you to sit in the back and watch her, so Teri doesn’t have to worry about 2 things while she drives.

Mom: OK.

Me: Thanks Mom.

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Updates, old and new.

OLD UPDATE:

Dr. Rao gave us the straight scoop on the echo, and said that the eco is just one of the things they use in evaluation a child, and since all of Gabi’s indicators are all good, he isn’t concerned. It just stays as something to keep an eye on, and when he compared results side by side, he said there wasn’t much change to be concerned with.

NEW UPDATE:

Gabi started to throw up some blood today. A little at first, then right before lunch a lot more. We had a bunch of trouble getting though to the ONE GI Doc that was able to explain things after Gabi’s last surgery, so we just decided to head up there. Having seen enough of this sort of thing, I think our “on the ground” opinion outweighs some standoffish GI secretary 100 miles away.

My mom was able to ride up with Teri and Gabi and be the eyes in the back seat in the case of some excitement, but the only excitement was Gabi’s unending love of peek-a-boo, thank goodness. They got to Milwaukee were able to get just enough blood to run some tests. I just got off the phone with Teri and they were admitting Gabi, and sending the transport team in to get an IV into her. Once they get the results back they will know how much blood she lost, and if she will need a transfusion to pink up a little. Overall attitude is good on all counts, and once I have some more concrete information I will post it.

-Ethan

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Short stay

Gabi got to come home with us last night and we are just thrilled!  We all got to sleep in our own beds. She is doing great!  One of the surgeons gave the go ahead for a 3-4 hour recovery and we held the nurse to that moment.  4:00 and we were out the door!  She was cranky cranky cranky for those few hours after waking up, but mostly she was cursing in baby language at the IV and board holding her arm straight. Then she had the pulseox  on the other hand so she had no hands and she did not like that one bit!  Once we moved the pulseox to her foot at least she had one hand free.  Her sats remained at about 82-83, which is great for her and her heart rate was stable at around 100, so we ran we had the chance.

This morning she is back to her usual self, laughing with her brothers and sister.  Thank goodness that procedure is over.  Not the greatest answers, but at least we have investigated all possibilities.  The ENT surgeon put probes on her vocal chords to see if there was any movement and she saw lots of muscle fluttering with the paralyzed left one, so we are very hopeful for a full recovery. And to know there was no evidence of any aspirations is so reassuring.

We haven’t spoken with Dr. Rao yet, but I am sure we will connect soon.  I am anxious to hear what he has to say about her Echo.  She is doing so great, I was so surprised to hear that her heart is not doing that great.  One day at a time…

Thanks for all the prayers and support!  We have wonderful friends and family!!

Love,
Teri

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Surgery update

The surgery got underway around 11. We have gotten 23 updates so far.

The echo results were not great. Her heart is still very enlarged and has fluid around it. Her PA’s look good and her pressures look good also. Her aorta is forming collaterals which is the body forming new pathways to and from the heart. These are expected but not good. Gabi may have to head into the cath lab for these collaterals. The main concern is that the regurgitation within her heart has worsened. This is basically backwash from her lower heart to the upper chamber. The fontan procedure could help this issue but she is not due for the fontan for another 2 years. So – we are waiting to hear from Dr. Rao and get the straight scoop. We asked about a possible transplant and the fellow that we spoke with said it could be on the table for discussion.

The GI doc has a spoken to us and he got as normal results as he could possibly could have. We will get results of the biopsies next week sometime.

The ENT surgeon just came in and Gabi has anatomically perfect airways. She said normally she just prints the images off to show the parents, but this time she burned them to CD to use as a teaching exhibit. Gabi does have a partially paralyzed left vocal chord. Good news is that it was paralyzed in the closed position, which is why she can still make a racket. The bad news is that because of that she cannot swallow properly, and her body has learned that to clear the space at the back of her throat she pukes rather than swallows. The doctor is sending her vocal chord movement numbers off to a doc at Harvard who specializes in this sort of thing. He has seen the most of it in the country and he should be able to tell us how much recovery can be expected.

SUMMARY: Time should help with the feeding, but only time will tell us that. Her heart is doing well, though not quite as well as last time.

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Here we go…

The day has arrived. We are heading up to Milwaukee early and she will be headed into the OR at 11:00 am.  There will be 4 doctors present all with a different agenda.  The anesthesiologist (cardiac), the GI doc, the ENT and our cardiologist.  Gabi will first have an ECHO done which is completely painless and easy but she needs to be sedated so they threw this in while she is under general anesthesia. They do want to check her heart function before they procede.  If all is OK, she will undergo a larangeal (sp?) endoscopy which will assess her airway, weak vocal chord, weak palate and crooked artynoids.  That will take about an hour and will be done by the ENT surgeon. Finally the third hour miss Gabi will undergo another procedure where I forgot the name.  The GI surgeon is going to take biopsies of her stomach lining to see if she has any ulcers, allergies… not sure what else.  He will also scope her small intestine and basically cover any upper and lower GI issues.

She is still vommitting quite a lot and it just doesn’t make sense.  There is no rhyme or reason to her vomits so we are anxious to get any results back.  I have a fear that they are not going to find anything.  Which I guess would be a good thing but poor little Gabi is miserable a lot of the time. I just would love to have an explanation and want to help her to eat.  She loves to put things in her mouth now, but most of  it just drools out her mouth because she is too afraid to swallow anything.

I have to say she is a trooper through all of this and so our all of our children.  Ethan Jr. is an incredibly anxious child and I can see him worry about Gabi even though he doesn’t quite understand his feelings. I do feel amazingly honored to be Gabi’s mother.  She may live to be beyond what all doctors predict or she may live a short life, either way she has made such an impact on our family… we are so blessed.

Say an extra prayer for Gabrielle as she undergoes these procedures.

Love to all and Happy September!

Teri

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No news is good news

Gabi is doing great.  She continues to get stronger and I think she gets funnier every day.  She makes her brothers and sister laugh so hard.  It’s a riot.

The procedures are still set for September 10th.  She is still throwing up a lot so although I am so dreading having her going back to any OR, I am hoping for some explanations and possible solutions.

There is a baby named Emma that needs prayers.  She was born in January of 2010 with HLHS and had her Glenn in June.  She is up in Milwaukee now while the doctors try and figure out what is going on.  She is being reviewed for a transplant because her heart is just not healing/getting stronger.  It sucks. Please pray for her whole family. Thanks.

Love,
Teri

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Some videos of Gabi & Co.

Here are some Danstrom family vidoes, the first one is Gabi at Northwest Community before the transport team took her up to CHW.

This is a very dark video of Ethan Jr. climbing the concrete light-post that is in the neighbors yard across the street. It is raining now, but once it stops Jr. wants to try it again in the daylight. He has been trying for a while, and finally was able to grip with his bare feet enough that he could scoot all the way to the top.
EDIT: we have better lighting now

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Heading home

Coming to CHW in Milwaukee is like going to see extended family. Everyone could not believe how big gabi has gotten and how good she looks despite the infection. Sadly, Northwest Community is becoming familiar as well.

Gabi is doing great again. The bacteria was identified as Ecoli and even though all the docs and nurses insist that this is not my fault, i still feel terrible. Did i not clean her well enough?? They all say that Ecoli is just a nasty bacteria that little girls are susceptible to. Her fever is down after about 5 doses of a hefty IV antibiotic and now they will switch her to an oral version and we can go home.

If she does get bother UTI then they wilL run some tests on her kidney function but certainly one UTI in a little girl is “normal” her heart function is good for her and her breathing has slowed. Dr. rao has given us the approval to hit the road, so as soon as Big Ethan gets here, we are heading home!!

Sorry for the lack of posts in the past month…just assume that no news is good news. We have just been enjoying the summer and cruising right along, the way things should be.

Love to all-
Teri

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Silver lining?

It appears that the VP shunt is OK, which was our biggest fear. The trouble is that the UTI lead to (or was caused by) a kidney infection. They sent a transport team down this afternoon and the Gabi/Teri team went up to Milwaukee. The docs and Northwest were just nervous having Gabi there since they really are not set up to handle a fancy girl like that.

The other kids and I were able to get over this afternoon before the transport team got there. We dropped off a bag of clothes for Teri and toys for Gabi. When we got there Gabi was sitting on Teri’s lap and when her sibs walked in she just lit up. Started up her talking thing (in between a cat meow and a bark) and Tom, Ethan and Marissa took turns giving her the toys they brought for her. The teddy bear with the stitched heart is her favorite (besides her puke covered blanket) but I think she just loves it because it makes her daddy cry.

So far the antibiotics are doing their normal thing and Gabi is pooping every 30 minutes and miserable. I just talked to Teri and Gabi is finally sleeping and Teri is using this break to get some food. I am hoping to have some more answers tomorrow after rounds, and I will try to get them posted before I head to work.

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Adventure Update

Gabi has been running a low fever for a couple of days, but we could see molars poking through and attributed the crankiness and fever to that. Yesterday afternoon the fever spiked to 103+ and she started to get lethargic. Teri took her into the ER and they did a bunch of test and turned up a Urinary Tract Infection. They gave her some IV antibiotics and Teri and baby were home to sleep in their own beds.

This morning Gabi was doing better and was sitting at the table and talking a little. For the past 3 days she has had to be held at all times and was having no fun whatsoever. The chatting and sitting by herslef was a big improvement. Just as I was about to leave for work Gabi started to puke more than normal, and her color got very dusky. She started to shake and shiver and was covered in goosebumps. We pulled some numbers and her O2 was low 70′s (normally she is mid 80′s) and her heart rate was at 180-190. We had her bundled up as best we could (Ethan Jr. kept brining more blankets) but she wouldn’t stop shaking and I could feel her body just burning up. We called 911 and Teri is back at the ER with her right now. They found a slight ear infection, and she was puking green on the way over in the ambulance.

So far, it could just be her dealing with some standard infections, and her VP shunt seems to be OK. They are going to do a CT scan to look at that closely. Arlington Heights is getting in touch with Mil, and once I know what the plan is I will post an update.

Prior to this she was doing great, and was getting closer and closer to starting to scoot around on her but. He mind is moving along enough that she is getting bored with just sitting around, so hopefully once she comes back home we can get her moving around a little on her own.

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Rescheduled

So the date of the procedure/surgery has been moved because central scheduling forgot to get confirmation from the GI dept and the surgeon is not available on July 2nd.  The date has been sadly moved to September 10th.  I have pleaded with all of my sources at CHW to please help me get a sooner apt, but they can’t magically clear a surgeon’s schedule.  So we wait.

However, when our speech therapist came over yesterday, we sat little miss Gabi in her high chair and handed her a biter biscuit and she instantly brought it to her mouth and took a bite.  After getting passed our initial shock, Sheila and I both cheered her on and laughed.  She NEVER puts food in her mouth. Toys, her blanket, fingers, toes go straight to her mouth, but never food.  So she was pretty shocked herself when all the sudden she had a crumbly cookie in her mouth.  She enjoys tastes of food so much, but once it gets to the back of her mouth, she gags and throws it up. But she did OK with the cookie, she worked through all of the gagging.

I hope everyone is having a nice summer and enjoys their 4th of July!  I know we will!!

Love,
Teri

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Surgery scheduled and announcing West 3 grills

Gabi is doing really well. She is getting so strong and laughing more.  The eating is still a huge challenge.  She takes nothing by mouth and one of her docs recently told me that she will probably have the G tube in until first grade or so.  I was so disappointed. But I know that using the G tube is really keeping her alive, literally. The hope is to get all of the anatomical issues under control in her throat area and then start really pushing eating by mouth and then over the years use the G tube less and less. Right now, she is still on continuous feeds all day at 76 mls an hour. She is hooked up to the pump almost all day.

So-after all her docs have conferred, they have tentatively scheduled many procedures for her on July 2nd.  She will be put under general anesthesia and the GI team will do their upper GI tests, ENT is running many tests to investigate the muscle strength of her upper pallette, her left vocal chord, the arytenoids. Dr. Sulman (ENT) will also be able to look more closely at the amount of scar tissue and be able to assess whether they can remove some or if it will be better to leave it alone. She has many issues going on in the back of her throat and into her esophagus and until they can get a better look, we don’t even know what we are facing.  Dr. Rao from cardiology also wants to do an ECHO of her heart while she is sedated.  Usually this would be an outpatient procedure, but with her cardiac issues, she will need to spend at least one night in the hospital.

I am certainly not looking forward to watching her go through this, but I am looking forward to getting some answers.

The G-tube extension is her favorite thing to chew on

Gabi's big brother climbing trees.

Gratuitous picture of Thomas

Ronald McDonald House Donations

We are going to drop of the RMH donations to them this weekend.  They are going to take our picture and have us talk to the PR rep at the house.  We are so excited to be able to give back.  THANK YOU FOR ALL OF THE DONATIONS!

Now, for the really exciting things!!

After dropping our items off to the RMH, we are heading over to our dear friends, the Buchmann’s, to finalize a project.

West 3 grills and spice rub will up and running soon!

Many of you know the story of how we met the Buchmann’s.  Their little daughter, Carsyn, was next door to Gabi in the hospital for many months. The unit we were both on was West 3 (the Cardiac ICU) at CHW. Carsyn devastatingly passed away  after a 6 month fight for her life.  Our friendship with the Buchmanns is lifelong; our bond is unexplainably powerful.  Chris and Ethan both enjoy cooking so they have developed the West 3 spice rub.  Many of you have already tried our complimentary jars, but they are ready to start selling it and take over the world!

Along with this, our dear friends and neighbors own a metal works business and Ethan and Mike joked about making the world’s best grill.  Gabi’s 1st birthday party was the impetus for this grill so that Ethan could make hundreds of ribs.  I, his practical wife, pleaded with him to not cook at the party and just enjoy ourselves.  SO- he comprised and decided to make his hundreds of ribs at our block party a week following.  After Mike put in many hours of overtime, the grill was ready to go the night before the block party.  Oh and my favorite part is that the grill converts into a fire pit!  Not just any fire pit, the best and biggest fire pit ever!  Every male in the neighborhood circled the grill for hours.

3 great friends + a premium custom made grill + the best spice rub ever made = West 3 Grills

The grill is seperated into 2 sections and can hold 18 slabs of ribs!

How awesome is that!

Love,

Teri

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Party pics

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Birthday party success

Gabi’s first birthday party was a success!!

I will be posting pictures soon but wanted to give a brief summary of the day.  We raised over $700 for the Ronald McDonald House along with tons of toiletries, lots of toys, books, puzzles, and beautiful handmade items for the families that are staying there. We are planning our trip to Milwaukee when the manager of the house wants to get a family picture of us for their wall.  We are super excited and think we will continue to collect for them!  It feels great to give back!

The weather held out and we even commented that the threat of storms and the sunshine peeking through the clouds was very symbolic of our past year.  Just when we thought, here comes the terential downpour, everyone pitched in to grab the things that couldn’t get wet to put them under shelter but then the wind would slow and the sun was able to give us a ray or 2 of sunshine.  Just as when Gabi was so sick and we prepared ourselves as best we could for the worst, God gave us His good graces with the sunshine of her smile and recovery. Gabi was in great spirits on Saturday smiling and and even gave one of our favorite nurses a good old vomit just to show off. The kids discovered thousands of tiny toads and even a few snakes to collect in the forest preserve.

Although we missed some of our great friends and relatives who were unable to make it, others showed up that brought tears to my eyes.  Thank you all for driving from Milwaukee, Oswego, Colorado and even Winnetka was a bit of a hike. And THANK YOU to our INCREDIBLE neighborhood for pulling this all together for us.  We could not have done without your help. From where we were a year ago to today, we are most thankful that God brought us to this wonderful location. “Mayberry on steroids” has been its nickname and it couldn’t be more true.

As always, thank you to Ethan’s aunt and uncle for their continued blessings and for the beautiful flowers and balloons delivered. This is a poem written by Ethan’s Aunt Meg that I have read often.  It is one of my favorites from her book entitled Words Collected on the Road to Silence: Messages to Me by: Margaret Coyle

This Day I Know
by: Margarent Coyle Irsay

There is an infinite flow of blessings pouring down, and around us, calling only for our gratitude, not as payment, but as the natural response to this gift of life.

It’s a blessed practice to cultivate the awareness of our part in this dance.  As we allow ourselves to be moved, we’re carried through the dream of illusion into the light, where joy is clearly and fully present. Whatever sickness is in us, the remedy is there also.  Everything is inside of us right now.

By the light of truth, I see my real Will.  It’s the Will I share with God, and it’s prefect. I put down every argument today, and move into full agreement. I know my intention is all the Spirit requires to lift me out of confusion and tune my focus to real vision. As I move, I know I go with God. Even when I forget, I know God holds me closely. My prayer to know is answered right now, even when I fail to listen. This is my confidence. This is my ground.

I thank God for everything, in every form, kisses and crashes, wonder and worry, friends and foes, hurt and healing. It’s all joined in the name of Love. It’s my Will to return completely to this knowing, by forgiving everything. I see It’s all unfolding miraculously before me, after me, and through me. My only true response is gratitude, and so I thank God for It All.

Gabi is doing really well. We are waiting for the GI docs and ENT to schedule an investigative surgery to find out what is going on with her damaged vocal cords, misaligned arytenoids and large amounts of scar tissue from being intubated for lengths of time. This will be schedule sometime in July and Dr. Rao would also like to do an Echo of her heart just for a check up.

If anyone has any pictures from Gabi’s birthday bash, please send them to us. We would be so gratuful.

Love to all and happy happy summer!

Teri

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Party will be today

We are going to go for the party today (saturday).  Let’s hope for no rain.!!

There is a large shelter area and we are putting up another large canopy tent, so there will be shelter if it does rain.

See you all soon!

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Birthday Information

I cannot believe my baby girl is turning one year old.  I honestly cannot believe she fought through all of the crap she had to deal with in just her first year of life.  She is a fighter and a hero and a true testament to our faith. She has taught us so much and brought us to a wonderful place.  Physically, we moved to Arlington Heights because of her to be closer to family and the hospital, but also a place where we have peace.  I have always been so terrified of death.  To think of loosing my husband, my mother, a sister, a friend or God for bid, one of my children, made me sick to my stomach.  I couldn’t comprehend someone that I love so deeply to leave me or to face that I may leave my children behind.  But, after reading and praying and witnessing children leave this world, I have been confronted with death like a boxer meeting his opponent’s glove.  And the reality is that Gabi may not live to her next birthday or may not live to see her parents tear up when she graduates from college, but I think I have come to terms with that.  I truly believe there is a better place and that this life is preparation for our eternal life.  We are all destined to an eternal life with no pain, no war, no anger. Just love. Now that’s comforting and I thank Gabi for teaching me that.

On that note…Gabi is turning one and IT’S  TIME  TO  PARTEE!

You all know the time and location from the evite.

  • There are lots of picnic tables, but you may want to bring a lawn chair or 2 and/or a picnic blanket for the kids to sit and eat
  • There will be 2 pinatas for the kids, 2 moonwalks, a kickball tournament, water balloons (depending on the weather), lots and lots of food!!, and bags for the adults.
  • There is a built in shelter and we will have a canopy tent also up.
  • There are bathrooms there.
  • The raindate is Sunday, June 6th. Check the blog the night before, Friday to see if we will be using the rain date.

Ronald McDonald info

We will be collecting items for the Ronald McDonald House in Milwaukee. As most of you know, we spent 6 months there and they never expected a penny from us.  Dinners were provided almost every night from the community, volunteers ran the house, and all of the families there were suffering.  This charity helps so many families in most often the toughest times of their lives.

Please consider making a donation.

We will be happy to take cash or checks made out to RMH. Even $5 or $10 makes a difference.

The list below is taken from the RMH website

Wish List

Thank you for thinking of the children and families who stay at the Ronald McDonald House during this difficult time in their life… you truly make a difference for them. Our families, some 1,200 each year, are facing unimaginable stress… their child is seriously ill, and their lives are turned upside down. We may just be the only bright spot in their entire day and we take that responsibility to heart! We are a home where kids can just be kids, away from hospitals and doctors and treatments… and parents can lean on each other.

Note: All Donations MUST be NEW and in the original packaging.

Special Wishes

  • Magnetic Free-Standing Dry Erase Board
  • Microsoft Office PC
  • Complete Button Maker System
  • Projecta-Theater-Lite 80″ Portable Projector Screen
  • Powerful, Rechargable Flashlight
  • Casio-Super Slim XGA DLP Projector
  • Canon 8×25 IS COmpact Image Stabalized Binoculars 7562A002
  • 40″ Samsung LCD HDTV (LN40B630)
  • Gift Cards to Brookfield Auto Care and Scrub-A-Dub for van maintenance

Special Baby Items
Look up our registry at USA Baby. Simply enter “Ronald” for the first name and “McDOnald” for the last name. We have registered for Carter’s crib sheets, Peg Perego High Chairs, and a Britax car seat.

Food Items

  • Greatest Need: Individually Wrapped Snacks: Nabisco Snack Packs, Granola Bars, Fruit Snacks, Sandwich Cracker Snack Packs, Cookies and Chips (great Grab N’ Go items for our families going to the hospital)
  • Juice Boxes (100% juice)
  • Frozen Pizzas

Household Items

  • Antibacterial/Disinfecting Wipes
  • Ziploc Baggies
  • White Wash Cloths
  • Dish Detergent
  • Kleenex
  • 22 oz. Sugar and Creamer – NJoy Brand
  • Splenda & Sweet N’ Low
  • AA Batteries
  • D Batteries
  • Flashlights
  • Postage Stamps (.44)
  • Black Sharpies (not ultra fine)
  • Dry Erasers
  • Dish Scrubbers (Non-Stick Safe)
  • Tea Bags
  • Lemon Pledge
  • Paper Towels
  • Baking Soda
  • Rubber Door Wedges
  • LED Night Lights (auto on/off)
  • Aluminum Foil
  • Shower Caddies (hang over shower head)

Gift Certificates

  • Target
  • Best Buy
  • Pick N’ Save

Please Consider Using Our Registries
For a complete list of items the House needs on a regular basis, we have registered at Target stores (www.target.com) through their Club Wedd, Baby Registry and Target Lists. In addition, we are registered at Pottery Barn Kids (www.potterybarnkids.com). For registries simply enter “Ronald” for the first name, “McDonald” for the last name and “WI” for the state. For Target lists search by organization and enter “Ronald McDonald House.”

Toy ideas

  • I did speak to a volunteer at the house and she said because of limited storage, they are well stocked and DO NOT NEED board games and art supplies.
  • They have lots of boy things but are looking for girl things for ages 0-17, except barbie, they have lots of barbies.

Ideas of what are needed:

  • Dolls
  • Baby toys
  • My little pet shop toys
  • My little Pony
  • itunes gift cards for the forgotten about teenage kids

We can’t wait to see everyone at the party and if you cannot make it, we thank you for all of your support this past year!

Love,

Teri

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Scope tomorrow

Gabi is doing great! She is getting stronger everyday.  Tomorrow is the fees scope which will look at her vocal chords.  They put a tiny camera down her throat through her nose.  Poor thing.  I am kind of hoping this is the issue because they can help with this. If there is damage to the vocal chords, all she might need is an injection of cortisone to bulk up that paralyzed or damaged vocal chord to help it to do its job.  This could potentially help the puking, help with her tremendous speech delay and God willing help with the eating thing and the refluxing.

If the problem is not the vocal chords, then they will proceed to do a swallow study to see what is going on down through the esophagus and lower GI trac.

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New milestones!

Gabi is doing great!  She is still vomiting and refluxing like crazy, but overall she is doing great.

She is now sitting up on her own, she has 5 teeth and can now actually play on her tummy for a few minutes.  Her face is planted into the floor because she has no strength in her pectoral muscles to push herself up but she’ll get there.  At least she isn’t screaming now anymore with tummy time.  As she gets stronger and reaches these milestones, we are hoping that this will help with her overall feeding and vomitting issues.  The GI doc explained that because her develpmental level is just barely reaching 6 months and 6 months is when the reflux peaks in most babies, we are hoping the worst is behind us (please knock on wood now).

The appt last week was extremely frustrating, but I have calmed down about it now.  I thought they were going to run tests and “fix” her, but we sat down, all 8 of us (a speech team, OT, GI nurses, dietician and the doc) and they watched her eat, or try to, and assessed that they don’t think her problems are just relux.  They think her vocal chords are damaged from all of her heart sugeries.  My face must have turned beat red because they asked me if I was OK and I said no.  I explained to them I had pushed for the speech team to do the scope of her vocal chords months ago but they said they were confident that the vocal chords were fine.

So, they had to wait to do the swallow study until after the scope.  So, this test will be on May 20th.  I pushed for a sonner appt, but alas, they couldn’t get her in. This is both good and bad.  Good because it shows that she is now not critical enough for them to get an immediate appt like we are used to, but bad because we have to wait.

In the meantime, they had me try her on a new formula, pregestimil, which has been horrible.  She got awful diarrhea and was throwing up even more. So, I am supposed to be sticking this new formula out for 2 weeks, but guess what?  Yes, against docs orders, she is back on Enfamil and back to her “normal”.

We are planning her first birthday and as I look back on this year, it seems so surreal.  We are so blessed. So very blessed to be able to still hold Gabi tight and watch her accomplish milestones that I completely had taken for granted in the past.  Every minute with her is a gift. The truth is, we have no idea how long she is going to live. I am just cherishing every moment with her that I can.

Enjoying this beautiful spring weather

Actually content playing on her tummy. Unbelieavable.

Silly girl

Happy Mothers Day to all.  I have friends that have lost their mother this year, lost their child this year, watch their children suffer, and some have been blessed with another child.  Find the blessing in whatever you are given.  There is a blessing somewhere….always.

Love,

Teri

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Yeah for Springtime

Gabrielle is doing really well.  She is still refluxing and puking, but she has been happy and getting stronger.  She now actually pushes up with her feet just the slightest little bit when you hold her in a standing position.  Normally she tucks her legs up all the time protecting her torso from any pain.  Stretching out the G tube area can be uncomfortable and sometimes painful for them so she protects herself as best she can. She still adamantly dislikes being on her tummy for the same reasons she tucks her knees up.  But the therapists force her to do be on her tummy and she is showing slight signs of improvement.

Her eating is still non existant orally, but we are working on it.  We have the feeding team appt this Wednesday to hopefully get this reflux under control. We asked about the fundiplication procedure, which is a surgical procedure (fairly simple) to fix the reflux, but all the doctors agreed that that would be a last resort and they would want to wait until she was at least a year old. She is happy to have the food in her mouth and actually laughs and enjoys the tastes but when it comes to swallowing, the food just sits in her mouth and drools out. She is just so afraid to swallow anything.  Poor thing.

I am anxious to see what the feeding team has to say about everything.  At least Dr. Rao covered his bases and we know these problems are not due to cardiac failure.

Ethan and I were reflecting on this past year this morning.  Last year this time, we were coping with the fact that we were going to have a sick child and that she may not live.  we were also packing up our house and moving 60 miles to be closer to the hospital, family and Ethan’s new job.  As we are planning Gabi’s upcoming first birthday, I was looking through pictures that I haven’t looked at in a almost a year, when she was on ECMO and had her chest wide open.  Feels like it didn’t even happen. That couldn’t have been my child, that couldn’t have been us.  But it was and it feels so surreal.

So much good has come out of her life so far; I can’t even imagine what else God has planned for her.

Love,

Teri

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Today’s appt

Quick summary. Gabi is doing MUCH better today.  We canceled the neurosurgery appt because we/they decided she was feeling better and if the shunt was malfunctioning she certainly wouldn’t be getting better.

Dr. Rao was thrilled with how she looked from a cardiovascular standpoint.  Her BNP number (which measures the amount of heart failure) was down to 240!  A normal person would be under 25, but around 200 is great for her. This means her heart is getting smaller and reshaping itself after the Glenn , exactly what it is supposed to do.

Meds were all held steady until we can get a good feed plan going.  He was OK with the changes I made and we will go with the plan I have come up with to see if she still gains weight and stays hydrated.  The dietician wanted us to add a few ounces of pedialyte a day just to make sure she is getting enough fluid.  If we cannot find a good plan in a few weeks, Dr. Rao suggested we admit her so they can watch her round the clock and figure out what to do for her.

In the meantime, we are enjoying her smiles once again and able to relax for the moment as we know her shunt is OK.

Thanks for all the support and hope everyone had a wonderful Easter!

Love,
Teri

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Happy Easter!

I hope everyone is having a blessed Easter today.  Gabi is having a rough few days. I spoke with the neurosurgeon yesterday (sat) after she has been lethergic and throwing up more often than usual.  Wed and Thurs she was throwing up at a rampant rate then on Fri the vomitting slowed, but she has been sleepy. Really sleepy. She is fighting another cold, so we aren’t sure whether or not these are symptoms of the cold, or whether or not her VP shunt is malfunctioning. The neurosurgeon on call told me to sit tight and watch for any redness on the shunt site, fevers, or her head swelling up/fontanell looking full.  Since we have a cardiology appt tomorrow anyway, we are just trying to enjoy our Easter then head up there and probably get a CAT scan of her head while we are there.  We were told to call at 8 am tomorrow so neurosurgery can find a time to see her. I just love CHW!

We are trying not to freak out but it is difficult not too.  I will update tomorrow afternoon.

Thanks and Happy Easter!

Love,

Teri

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thank you

Wow. thank you guys for your support.  Yesterday Gabi woke up with a slight fever and a cold.  I dont’ know if that is what has been bothering her few the past few nights, but even though her sats are a little lower, in the mid 70′s, I think she is doing OK.  She was still up last night at least 4 times, but I like it when there is at least an explanation…I knew she just didn’t feel good.

I reread my post yesterday and it would seem to a new reader that I am going through this myself.  I selfishly forgot to mention how absolutely wonderful my husband Ethan is!  I would not be able to get through ANY of this without him.  He is struggling too, but we deal with this in different ways (as men and women often do) and we pick each other up every day.  He is there in the middle of the night taking his turn with Gabi walking with her and consoling her.  I tell him that he needs to get up and go to work and look and act presentable and maybe put a thought together…where as I can stay in my pjs all day if I need to.  But he still gets up to relieve me when he knows I just need an hour of sleep. I couldn’t have chosen a better partner!

I am feeling better today and with this weather, who could be down?

Love,

Teri

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Holy Week

What to say what to say…

Sorry for the lack of posts.  I have been struggling. I am completely overwhelmed with the therapies, the no sleep, the puking, the gagging, the feeding regimens, the meds, the doc appts…not to mention the other 3 kids.

I didn’t want to be negative on here so I just avoided posting instead.  But the more I think about it, you all carried us through this past year so I shouldn’t shut people out.

Here is a summary:

Ear infections are gone. She is off the antibiotic but boy that messed up her digestion even more.  She was refluxing something fierce.

Therapies are going.  She is progressing very slowly.  Very slowly. And now that everyone is out in this beautiful warm weather, there are babies coming out of the woodwork and she appears to be more behind than the 3 month olds that I have seen.

As we enter into this Holy Week, I am still challenged and settling with all that has happened this past year.  As the Spring air gets warmer each day and the sun shines on a more continued basis here in crazy Chicagoland, I KNOW and believe how grateful we are that Gabi is here with us everyday…she is alive and sleeping beside me each night.  For that, I am so gratfeul.

Gabi is up crying on average 5 times a night.  She is still puking, refluxing and although she is progressing with her therapies, it is extremely slow.

We have a cardiology appt next Monday with Dr. Rao and our feeding clinic appt is on April 28th.

Have you ever seen a more serious face from a baby on a swing?!

Smile sunshine.

Seriously, spikey hair? so not funny.

An adventure to the Rainforest Cafe

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ear infection

Double ear infection!  Awesome. She is in Amoxicilin and we are hoping she still does not have a high tolerance for antibiotics since she has been on them basically the first  years of her life.  We are thankful she didn’t have to be admitted to the hospital for the cold and infection.  I have been checking her sats and they are holding steady at about 83-84 which is great for her!

Dr. Rao said it would be OK to give her another month on the clonodine patch, so her puking is somewhat under control.  We are down to about 4-5 times a day instead of every hour.  She is still up a lot at night crying but I am sure that is due to the ear infection.  The GI doc was disappointed that I didn’t stick out the 2 weeks on the special formula, but she has done MUCH better back on the Enfamil, so that she will stay on.

Other than that, happy happy baby and the therapies are in full force.  She actually holds a baby cookie and gnaws on it.  And is making good progress with her eating.  She is still not sitting up yet, but she is certainly getting stronger.

We are loving this spring weather and just loving seeing our wonderful neighborhood out and about again.  Still trying to figure out what this “normal” life is, trying not to be afraid, and just trying to enjoy Gabi and the kids because I have to remind myself everyday that we are so very blessed!

2 kiddos to keep in your prayers from the CICU.  Elizabeth and Emma.
elizabethbrianne.com
www.caringbridge.org/visit/wolfekids

Love,

Teri

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wow

It has been way too long since I last updated. So sorry.

Gabi had a horrible week last week but so far these past few days she is doing better.  Last Monday, we had an appointment at CHW with our new GI doc.  They couldn’t quite grasp how bad Gabi’s feedings were and treated me like I was wasting their time.  Pretty upsetting, but I didn’t care, I pushed through and insisted they listen to me. He had a number of suggestions as to why she was so miserable. Listed are the possibilities in order from least severe to most severe.

  1. An allergy to the Enfamil formula she is on.
  2. Her G tube placement could be hitting a nerve in or around her stomach
  3. Her stomach is not draining efficiently into her intestines (she already had 2 upper GI tests done and this proved to be normal)
  4. There could be a blockage in her intestines (but because she is not throwing up bile, this is highly unlikely)
  5. During her heart surgeries, a large nerve might have been damaged that is connected to both the heart and stomach (this would be the worst of all the possibilities)

So- we started with #1 and he switched the formula to nutramigen. It is made by Enfamil and is pre-digested where the proteins are broken down. I had high hopes.  After about 10 hours on the new formula (which by the way is $30 for a small can!!), the diarrhea set in.  She was pooping every hour with a runny snotty poop. And we all know what happens with diarrhea, sore butt and dehydration.  And the gagging and puking had not slowed, if anything it was worse. I called Dr. GI the next day to let him know what was going on.  Gabi had been literally crying for 24 hours straight.  He seemed to be surprised by this reaction. Apparently, he has never heard of diarrhea as an outcome from this kind of formula. He thought maybe she coincidentally had a virus at the same time.  He wanted to stick to this new food for 2 weeks and then make another move.  I gave it till Friday, 5 days.

The diarrhea lasted all week and signs of dehydration and extreme fatigue (both Gabi and me) set in. I called again on Friday and they insisted that this formula cannot cause diarrhea.  Well, motherly instincts told me otherwise and I switched her back to Enfamil. Wouldn’t you know it?  After about 12 hours, the diarrhea stopped and her butt is now finally healing  up.

I don’t know if you remember the trials of trying to wean down the clonodine patch also.  Well, she was down to a half a patch and i wondered if that had anything to do with all these feeding issues.  We had the auction dinner this past Saturday and I was exhausted and so was Gabi. I made the decision ( I’ll admit  it was a lot selfish on my part) to put the full transdermal patch back on.  We both just needed a nights sleep.

Shazam!  (who says that??) she slept that night from 8 pm to 5 am!!  She has NEVER done that.  Never. It has been 3 days now back on the full patch and back to Enfamil and she is the happiest baby!  She hadn’t smiled in over 3 weeks, now she is laughing and talking again.

Unfortuantely, now back to the work week and I am dealing with the docs upset with me for making those decisions.  The nurses both told me that they would get back to me with a new plan.  I did ask a while back if keeping the clonodine patch on would harm her and the cardiologists said no, it is just a dependency thing at this point.  Let me tell you, if that is what she needs right now, then I am going to insist to please let her get what she needs.  It’s a quality of life issue at this point, in my opinion. I don’t think anything is anatomically wrong with her and I don’t think her G tube is misplaced either.  I think she just needs this patch until she can get moving more and eating some food.

Therapies are going really well and really helping to get Gabi moving. She is still not sitting up but she is getting close. She still has torticollis ( tightening in her neck muscles) on her right side.  Our PT is working on tummy time, turning her head to her right, and getting her hip muscles extended in a superman position, all of which she cries and cries and complains complains.  I can see the tip of her nose turn blue when she gets upset and to someone that doesn’t know her, you would think she wasn’t that upset, but she doesn’t have the stamina to cry any harder.  And PT said that on her tummy, it is really hard for her to breathe because she is fighting her weight on top of her lungs, so it is probably really scary for her. Kind of was sad for me to hear. Sometimes, I think she is on her way to being a normal baby, but hearing this was a reminder that she will always be sick.

OT is going well. She is using her hands more for a purpose and finding her feet.  She still will not put any pressure on her feet when you hold her in a standing position. But we’ll get there.

Speech is hilarious. We are working on getting her tastes of rice cereal, applesause and bananas.  I bought her one of those Nuby sippy cups with the soft spout and she loves to chew on that getting literally half a drop of formula in the mouth and then promptly gagging.  She enjoys the tastes of things but just isn’t getting the hang of that swallowing concept.  We’ll get there.

The Wings of Angels dinner auction was a HUGE success. It was an incredible honor for Carsyn and I am so proud of my dear friends Chris and Michelle for organizing the event.  They raised $32,000 for the the hospital!  Unbelievable. Not to mention, it was a blast to see our heart families that have instantly become dear friends. To see the docs and nurses outside of the hospital was something really special.  When I met Dr. Hagen’s wife, I got really emotional.  Because I know to the doctor’s family, they sacrifice a lot of time without their spouse at home, but that time spent away from home saved my daughter’s life. They are amazing people and to see them “as normal people” was an honor.  And to meet their supportive families means so much.

And of course, the nurses and Jenni and Jackie all know how much we love them. Here’s a few pictures.

We are having much better days this week and the sun is actually shining at the moment and spring is almost here!!  To quote Marissa, Wahoo!

Love,

Teri

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Oh the feedings…

Gabi is doing great.  Her feeds are the biggest challenge for us now.   We have an appt at CHW with the feeding specialists in March, but Dr. Rao’s nurse is trying to pull some strings and get her in sooner. She turns a dark purple when she is gagging and choking on her spit up and then coughs and sputters out the throw up. Sometimes it is just a small spit up that eventually makes its way out, but other times it is projectile and shoots out of her mouth so far that it if baby puking was an olympic sport, Gabi would cerainlty get the gold medal!  The kids cheered her on this morning and gave her a quick gold medal ceremony. We found it hilarious or maybe we were just delirious. A little of both.

I was trying to get clearance over the phone to try adding rice cereal to the formula to thicken it up a little so it wouldn’t come back up as easily.  Never got the clearance because they want her to see the GI doc and feeding clinic first, but guess what?  Yes, I tried it.  I knew it wouldn’t hurt her so I went with my motherly instincts and went for it.  Well, it didn’t help anyway.  The spit up and vomit was just thicker too.  Oh well. A for effort, right?

She is getting big and a lot stronger.  Therapies have started and are helping her a great deal.  I check her sats often and they are hanging in the mid- 80′s which is excellent for Gabi!  She is doing well… we are quite blessed.

Love,
Teri

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2 follow up appts

Gabi is doing great.  We had a cardiology appt up in Milwaukee on Monday and everything went well. Dr. Rao was there and said she was looking good.  He did tell me that at one point in early Fall, a lot of the docs were worried about her.  But now he is so happy with how she is doing!  And I am SO happy he is back from his trip.  He is from India and he visits his family there every January for a month. It was fun to hear all about his journey.

Gabi had labs drawn and a chest x-ray and everything looks good.  Now, the plan is to try and wean her off some of her meds.  He had taken her off her lasix but with her recent hospitalization for the virus, she was put back on.  In a week, we will take that dose down to once a day instead of 2.  He also wanted to wean down her clonodine patch ( a transdermal therapy) for anxiety and blood pressure.  On Monday evening, I followed his instructions to cut the patch in half and see how she does.  He explained that some babies don’t have any reaction to a lower dose, others get more pukey and irritable. Guess which category Gabi fell in?  yes, the extra pukey and irritable.  She was up for 2 nights in a row throwing up.  We decided to put back on a full patch and try going down to 3/4 of a patch this Monday.

That BNP number that is used to measure heart failure was at 265, down from above 600 a few months ago.  He said her heart is still working hard, but def. healing from the surgery. We don’t have another card appt for another 2 months!

Here is a picture of how they do the chest x-ray.  It looks like a medieval torture device…she loves it, as you can see.

This morning, we had an 8 month check up at the pediatrician.  She has now gotten the clearance to catch up on her vaccinations.  She got 5 shots today, which 2 included the synergist, for RSV.  This is only given to high risk babies and toddlers and costs $1200 per shot!!  Thank goodness for insurance.

We have PT, OT and speech starting to come to the house on a regular basis now.  They are starting at once a week and will ramp it up to twice a week each soon. Gabi is going to be working hard.  I am also waiting for a call to schedule an appt with the feeding team at CHW in Milwaukee.  This will include a GI study, feeding specialists to conduct a swallow study and a nutritionist to make sure she is getting the correct amount of calories. Right now, she is just getting formula, but at 8 months, she needs to start getting baby foods, but they have to make sure she will not aspirate if and when she is fed by mouth. I have been told that starting baby foods will help with the puking and gagging.  It is too easy for liquids to come back up and her stomach is not stretched enough to hold all the amount of liquid she is getting. C’mon smashed peas and bananas!

That’s about it for miss Gabrielle.  Doing well.   Don’t forget to ask me about the auction on March 6th, if you are interested in attending or donating an item.

My happy girl

Love to all-

Teri

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Home sweet home

Gabrielle is home once again and doing great! Her respiratory rate has slowed tremendously thanks to the lasix and the breathing treatments.  The docs all concluded that she had a virus of some kind and is definitely recovering. We have a follow up appt with Dr. Rao in Milwaukke next week and our pediatrician tomorrow.  We also had the home nurse over yesterday afternoon and she said that Gabi sounded good and looked nice and pink.  She unfortunately came home on O2 but it should be only for a week or so.  She hates that nasal cannula and continues to pull it off her face.  The docs said when she is sleeping is the most important time to have the O2 on.

She is once again smiling and trying her hardest to babble.  Ethan took this video of her when she got home.

We had our friends, the Buchmann’s (Carsyn’s parents) over yesterday and it was great to visit with them.  They are continuing to plan for the auction on March 6th. If anyone has anything to donate for the benefit, let me know.  All proceeds go to the cardiac floor at CHW.  The plans for the funds include: a Wii for the older cardiac kids in the playroom for theraputic use, additional bouncy seats and swings that were made in this decade, lots of toys that PT and OT need, and the majority of the funds will go towards building the garden outside the cafe at CHW.  I am so excited for this event.  If you want to attend, please let me know, there are plenty of seats available. Thanks to Anne R and Rachel for their donations!

Thanks for checking in.  Love to you all.

Teri

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The nasal swab tests came back…all negative.  RSV, Influenza A and B, paraInfluenza, blah blah blah.  Not that being positive would have changed her course of treatment but now she can come out of isolation. She continues to get pep treatments (breathing treatments, like a nebulizer but much more intense). They are slowly weaning her off the O2.  Hopefully today she will get to room air. She is so bored but at least she has her Spongebob to watch.  She loves Spongebob!

They do chest x-rays in the early morning so we’ll see what the docs say about that.  I didnt’ get to see it today.  I have learned to read those pretty darn well. They are looking for the fluid that is around her heart and in her right lung.  Hopefully the lasix has helped her get rid of some of that.

Overall, she is doing well. There is hope that she may be able to come home today. Yeah!

Thanks for all the support!

Love,

Teri

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Virus

Gabi’s blood tests all came back normal, so we are waiting for the nasal swab test results which will show if she has a virus.  They are thinking RSV.  SHe is doing really really well though.  She is talking to the nurses and giving plenty of dirty looks to everyone.  That’s my girl. 

The fluid around her heart has been labeled “no big deal”  I don’t know how that is no big deal, but it is.  They put her on extra lasix to pee off some of the fluid.  She is still breathing fast which is the biggest symptom she has .  She is a little congested but not bad.  She is coughing but not hacking up yucky stuff.  I am eager to find out about the virus tests.  Stinks that we are back here for a few days, but not to worry too much, she is doing OK.

Love,

Teri

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Short detour

Teri called me today on the way up to Milwaukee. Gabi’s breathing hasn’t normalized and when Teri took her into the Pediatrician her 02 levels were low (mid 70′s). Rather than go back and forth with the local hospital and go up to Mil. late tonight, she just grabbed some clothes and took Gabi up there this afternoon. So far they can’t quite figure out what the issue is. They did an X-Ray and things look alright, and she isn’t really showing any infection symptoms. It might be some sort of respiratory virus, but the swab on that won’t be back until tomorrow. They didn’t see anything right away on the echo either. When we get some more info I will update things. So far this looks like more of a hassle than a huge worry, and I hope it stays that way.

LATE ADDITION: Text from Teri: “Found some fluid in her heart, not a terrible worry but a concern”

Comments { 1 }

Gabi is certainly keeping me on my toes.  She is so pukey and so gaggy and I was told that was going to get better after the Glenn, and so far she is still suffering from throwing up and choking on the spit up/vomit.  I called her doctors and they all said things will get better with time.

One of her home nurses was over a few nights ago and agreed with me that her G tube area was bothering her. The G tube heals up to be similar to an earing hole.  Usually when i do my daily cleansing, she isn’t affected by it at all, but all of the sudden she was in pain from tenderness.  Called surgery and answered their list of questions and she determined that Gabi probably just yanked on it too hard (which is really hard to avoid because she is so grabby now). She is grabby, gaggy Gabi. Ha! After a few days, it is feeling better.

Starting on Sat evening, she looked really terrible, was breathing fast and very pukey. I checked all my bases, sats, temp, felt her tummy, even listened to her with our stethoscope and everything seemed fine.  Today, she is still breathing fast and her night sleeps are miserable, so after smiling a bunch this morning, she is taking a long nap.  It is so difficult to decipher whether she is tired, has a cold, even gas, or is her heart failing…

2 side notes:

1. A baby girl named Ellie Potter was born a month after Gabi at CHW with the same diagnosis, HLHS.  She is awaiting a heart transplant and she is so very sick.  I know her parents well and I pray for strength for them and for courage to hold their little Ellie tight as long as she is with them here.  Their website is elizbethbrianne.com.

2. THE COLTS WON!!  We are beyond the Colts’ biggest fans as they are family.  Literally family.  I am so thrilled for the entire Colts crew as they head to another Superbowl victory!!  Although Ethan and I are SO SAD that we weren’t able to attend the playoff games in Indy because of Gabi, we were just as excited at our own party feeling blessed that she was sitting on my lap and Ethan was teaching our 2 boys about football in our living room.  GO COLTS!!

have a wonderful week!
Love,
Teri

Comments { 4 }

Just hangin’ out

Hi everyone!

Comments { 9 }

Therapy has begun

This morning, we had 6 visitors come to the house to do their evaluation of Gabrielle:  PT/OT/Speech/Develpmental/a nurse consultant and the service coordinator.  They all assessed her on their goal score sheet.  All of them agreed, she is at a 3-4 month old level.  She is 7 months, so she is quite behind, but not so severe that she can’t catch up. Things def. could be worse!! She has qualified for PT and OT both twice a week and speech starting at once a week but moving towards twice a week soon.  She tolerated all the handling and movements well but certainly voiced her opinion when she was unhappy or working too hard. I am so excited to get this started.  Now that we are home, I don’t know quite what the next step is.

I am also quite overwhelmed with emotions lately.  An 18 month old HLHS boy just died for no real reason, and came so unexpectedly.  Another little friend that I have known since Gabi was born died right after Christmas.  His parents are absolutely devasted.  Another little heart friend is waiting for a new heart and is not doing well as she waits at CHW.  Another friend just had her Norwood and had a tough few days, but is now pulling through.  I know that every day with our children, not just heart children ,but healthy ones as well is a gift because you never know what might happen.  I was trying to get involved in different heart groups with families of heart kids to get support but I just don’t want to think about it everyday.  Is that weird?  I don’t want our lives based on her heart condition and how fragile she still is.  My perspective has changed so much.I feel very disconnected from everyday things…maybe it’s just the winter blues…

Enough of my craziness, gabi is doing great.  Everything is really good, except for the feedings. That is still horrid.  She is still pukey and very gaggy but I have been told that it will get better over time.  I just realized it has been more than a month since her most recent surgery. wow. Even these dreary winter days go by pretty quickly.

Hope everyone is hanging in there during these brutal winter days.  Can you tell I don’t like winter??? Every january/february, I try so hard to come up with a scheme to move somewhere warm and then when May FINALLY rolls around, and I forget about it!

Love to you all-

Teri

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New normal

So apparently my new normal is so insanely busy that I can’t even sit down on the computer and post for a minutes, muchless check my email. Well, check I can do, but respond…that would be too much.  Gabi is doing really really well.  She certainly keeps me on my toes between all of her meds and feeding routine.  And I am JUST starting to let her cry for more than a few minutes.  My other kids, I had no problem letting them cry it out, but this precious girl, oh no…. she’s my angel.  I know in a few days/weeks/months, I will have created a monster , but right now, she is my baby girl!

I am anxious to get PT, OT and speech started next week. I still push her just enough to get her tired.  I can’t believe she is already 7 months. She sits in the bumbo chair or even just in my lap.  Her trunk muscles are so weak that she is no where even close to sitting.  She is just starting to bat at toys and become aware of her feet. This morning she actually shook a rattle intentionally  when I put it in her hand.  She loves her brothers and sister.  She watches them run around and laughs when they approach her and say “boo” or “blaaah.”

She has been to the pediatrician and the home nurse has come over a few times to check in.  They all agree that she looks great.  I have even taken her out to the store a few times and she loves adventures!  It’s interesting the looks I get when people peek into the car seat to see a cute baby and the first thing they see is her G-tube hanging down.  Their reaction is a slight pause and “oh she’s so cute,” when I know they are wondering what is wrong with her.  I just politely say thank you as they back away as quickly as they can without being rude.  I don’t find it offensive in the least bit. I am sure most people just dont’ know what to say.

There have been MANY times where I see a handicapped child and just keep walking and try not to stare.  But I do think about the parents and the child and used to think, ” I could never do that.”  or “I feel so bad for them.”  All those parents are just like me: shocked, saddened, angry but so full of love for their children that they don’t care what anyone else thinks.  My perspective has totally changed.  Everyone has a story, everyone has pain in their life, and if you don’t, then it will come.  I am so grateful that my life has changed because of Gabi.  I won’t lie, it is overwhelming and the fear and selfishness creeps in, but my life is so much for the better now.I cherish every moment, even when my 4 year old Thomas is driving me CRAZY….he is a gift, like all children.

I have so many friends that need prayers and support that I am trying to focus on them and give back to everyone that has helped us.

Thanks for checking in. The Danstrom’s are doing excellent!

Oh- the Wings of Angels Endowment fund in Carsyn’s honor is holding their first fundraiser on March 6th. It is going to be just outside of Milwaukee and going to be a blast!  If you want to attend, let me know, or if you have something to donate for their silent auction, let me know that too. A gift basket, or movie tickets, or a something hand made are great ideas.  All the money goes towards building a garden at CHW where families can go and find some peace when their child is sick.  After that is built, all the money will go towards the CICU, the 3rd floor, at CHW.

Love,

Teri

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Pictures

Happy New year everyone!  With a lack of time at home these days, I am just going to post some pictures for tonight.  Gabi is doing awesome, although a bit gaggy…a bit worried, but nothing to call 911 for yet. One day at a time.

Christmas morning

My attempt at getting a lovely picture with my 4 children

Bikini model for sure

Silly Thomas

We rang in our New Years this year with our dearest friends/cousins, the Coyle girls…Jennifer, Coco, and Tessa.  I cannot thank them enough for their friendship, visit and generosity.

Love
teri

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First follow up appt

Sorry for the lack of updates.  Gabi is doing so incredibly well.  I just cannot believe it.  She is truly a miracle.

Monday we had a follow up appt at CHW  with Dr. Rao, our cardiologist.  She had a chest x-ray, labs drawn and an exam.  He said he has never seen her look so great.  Her chest was totally dried out, her sats were a little low at 79, but they SHOULD increase over the month or so to the mid 80′s.  He said we can try and lead a “normal” life now. Although I don’t know what that will mean for us, to hear that coming out of my most trusted doctor was like God’s voice telling me…you did it.  You made it through. He chuckled at the tears in my eyes and shared in my joy. Our next appt at CHW isn’t for 2 months!!!!   2 months!!  Unbelievable. How am I going to stay away from all of my new friends?

I just cannot express to you how elated we are.  I know the next few years will still be up and down and probably a few hospital stays with colds and flus, but I know we will make it.  We have reached that light and now we can just enjoy every smile and every coo and every milestone we share with Gabi.  She is so happy and so much more relaxed.

The next big hurdle will be therapy. She has never eaten anything by mouth and she is quite behind developmentally. But we’ll get there.  We have speech and PT and OT coming over starting next week.  And we will continue with our home nurse visits.  WE are so blessed and so thankful.

If I listed everyone that has been there for us, it would be many pages long.   I know there have been many times that I have been aware of a family needing help/support and I MEANT to get around and help them but never found the time.  Never again.  I will pay all the help and generosity forward to others that need God’s grace in their life. I have learned so much from my Gabrielle and all the other babies in the hospital. I still think there could have been an easier lesson, but God knew what His plan was for us and knew that I needed a kick in the butt.

Love,
Teri

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Merry Christmas

Our little Christmas Miracle is enjoying her first Christmas. We are so blessed to be all together, and can’t thank all the supporters enough for helping us get here.
Merry Christmas to all.

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The Eve of Christmas

…and Gabrielle is GOING HOME!!!  I am sitting in her room waiting for her last ECHO…my eyes filled with tears of joy.  They just had a Santa come by to drop off presents and had a “choir” of volunteers singing Christmas carols.  Just adorable.  I hope it brings a small smile to the kids that are here during Christmas time.  We are so blessed to be able to head home, but there are many kids that cannot go home today or tomorrow.  I pray for their healing and I pray during this Christmas season that the families  of children here and of those that have lost their children this year (especially Carsyn and Isabella and Praise and Logan and Matthew) may they find peace and love and know their little ones are celebrating with Jesus right now.

Just the ECHO needs to be complete for discharge and WE ARE GOING HOME FOR CHRISTMAS!!  Praise our good Lord and MERRY MERRY CHRISTMAS to everyone.  May you all find love, joy and peace this season…forget about family drama and the presents and any resentment and annoyances.  Drink a hefty  glass of wine and hold your family tight.

Merry Christmas.

Love,

Teri

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Tubes begone!

I came in early this morning to find her face clear with no O2 cannula!  Thank you Carianne for getting her to room air!  Then Eliot, one of the PA’s, came in, gave her some morphine, and yanked those chest tubes out.  he also removed the pacer wires from her heart and as soon as we get her labs back, they will remove her CVL, the central line in her neck.  She is almost tube and wire free! (except for the VP shunt and the g-tube, but those aren’t going anywhere). 

They haven’t rounded yet but the docs will discuss her feed schedule and finalize her home med routine.  I just cannot believe this!  She looks sooo fantastic.

As a mom here, you get real close with the staff, especially the nurses, RT, PT/OT and the PA’s.  Anyway, quick funny story…Eliot came in with his “box” of supplies. Literally a carboard box.  Immediatly, I thought to myself, that would be a perfect gift for the PA’s…to get them a nice handled bucket or something for all of their surgical supplies.  He saw me looking at it and said “don’t tease me about the box”  Apparently I wasn’t thr first parent to notice the lame cardboard box. well, I laughed and then he told me that he was actually making a wooden box with some fancy nice solid wood and it is almost finished.  I took a picture of the cardboard box and will post it when we get home and then he promised to show me the new box when it is complete.  Stay tuned for the very exciting conclusion of the PA supply box…

Christmas is almost here…I feel like a kid that can’t sleep wiating for Santa.  I can’t wait.

Love, Teri

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It’s POSSIBLE that Gabi…

…MIGHT BE HOME FOR CHRISTMAS!!!!  Key words here are “possible” and “might”.  But you know what, I’ll take ‘em.  The chylous is still there but it is very minimal.  She is at her full feeds now, 40 cc’s an hour since 7 pm and so far, so good.  The tentative plan is to pull out the last 2 chest tubes and take out the central line in her neck tomorrow in the morning.  They have to wait for a day to watch her and also wean down the O2 a little and then if all goes according to plan, she will be able to go home Christmas Eve morning.  I just can’t believe it.  I just can’t believe how incredicaly blessed we are. 

We should know more in morning.

Love,
Teri

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chylous

of course our little bundle of joy has to keep us on our toes. She has chylous.  I was so upset last night because this could keep her in the hospital for weeks…BUT even though there is chylous, there is hardly any drainage.  Usually when there is chylous, the drainage increases quite a bit.  She only drained 10 cc;s total for the day out of her chest tubes.  Last time, she would drain in the 300′s for a day and it got down to 80 cc’s when they finally pulled the tube.  She is up to 25 cc’s of formula per hour ( and tolerating it…woohoo!), so this is not normal.  Usually it is pretty cut and dry if the kiddos have an effusion, but they just aren’t sure what to do with this information.

Other than the chylous mystery, she is doing great.  On my way up to Mil through this snow. Can’t wait to see her.

Love,
teri

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Feeds improving just a little

WEll the feeding is getting just a little bit better. Their plan is to do 4 hours on, then 1 hour off.  She is at 10 cc’s now and right now is her hour break. At 6 pm, they will up   it to 15 cc’s/hour for 4 hours, then off for an hour, then 20cc’s for 4 hours….all the way up to 40 cc’s an hour.  Yesterday they couldn’t get her to stay at 10 and now she is tolerating 10 fine, so slowly slowly we are going the right direction and so far…..no chylous!! Fingers crossed.

Thanks for all the prayers/support. Gabi is doing great. The nurses said she was up and batting her toys around while of course, watching Spongebob, her favorite.  I can’t wait to go back up and see her tomorrow morning.

Love,
Teri

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Not much new

Gabi had a good night and is doing great overall. The feeding thing is still a huge issue.  She is stuck on 5 cc’s an hour(an ounce is 30 cc’s, so it is such a small amount).  They have tried several times to bump that up to 10 cc’s but she is not having it.  She throws it all up. All the drugs she was on and having heart surgery can apparently really mess up your gut.  I kept thinking that the Glenn magical fixes all eating problems, but I suppose that takes time.  Patience is a tough thing.  She still sounds really hoarse…it’s actually really cute. They are still waiting for chylous.  5 cc’s is a bit too small of an amount to be able to see chylous, if it is a problem.  But Jen, one of the PA’s, yesterday explained to me on her chest x-ray, that she does not THINK there is a chest pleural effusion, which would be the BEST news ever!

Pictures, some are graphic just beware.

Pre-glenn: waiting in the pod room for surgery to begin

Pre-glenn: waiting in the pod room for surgery to begin

This is in her room where the docs are wheeling her back after surgery

This is in her room where the docs are wheeling her back after surgery

Just returning from surgery

Just returning from surgery

One of the docs are our favorite nurse and great friend, Carianne.  She was thrilled when I snapped this picture!

One of the docs and our favorite nurse and great friend, Carianne. She was thrilled when I snapped this picture!

Post glenn and very drugged up

Post glenn and very drugged up

brothers and dad visiting

brothers and dad visiting

After extubation.  Her face is red just from the nasty tape.

After extubation. Her face is red just from the nasty tape. Doesn't she look good though?

Resting comfortably

Resting comfortably

Overall, the docs are happy with her progress. And so are we!

Another heart family that we have met is at CHW today waiting for their son Thomas to get his Glenn.  Keep them in your prayers.  And whoever (whomever??) plowed our driveway yesterday is the best ever.  What an awesome Christmas gift to be able to drive into our driveway.  It’s the little things that matter so much. Thank you.

Love,
Teri

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New morning

I decided to bring my hot sauce omlette up to the room to eat, so I wouldn’t miss rounds. Ran into a friend on the elevator which I didn’t recognize right away…still a little tired from all the spice producing insanity at the Buchman’s last night. Walking though the hallway saw some of the regular doctors and nurses…pretty normal stuff. I turned the corner in our room to see Gabi’s bed surrounded by nurses and doctors, and not much noise. My heart just dropped…anytime there are the many people standing around the bed at ouce it is not a good thing. There weren’t any alarmas going off…and I walked over to the bed holding my bag of toast and balancing my coffee on the omlette container. There was Gabi, eyes wide upon, looking a the RT and just kind of babbling. UNREAL! I hurried to put my food down, and almost dropped my coffee, then scrubbed the heck out of my hands and went to her bedside.

There she was looking at me, squeeing my finger…just like a regular baby. Her dressings are off her chest incsicion, and looks not that bad. Ethan Jr. commented that it must have been a little surgery since the wound is not that bad…from the mouths of babes. Gabi did have to have a breathing treatment (that was why the RT was there) and we still need to wean the O2 and such down, but she has made some pretty impressive strides in the last 24 hours. Much more than I thought would happen.

The next concern is the leaking from the chest tubes, but the docs and nurses are taking it slowly (Gabi speed) and so far things are OK. She is still putting out about 10cc from the two chest tubes, but they are just watching that and hoping that it decreses.

It is nice to have everybody together, and really great to see some good progress, it is amazing what can happen in just 24 hours.

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Extubated!!

Gabi girl is extubated and doing awesome.  They gave her one large dose of diaretic then turned off the fentanyl drip and Dr. hagan said as soon as she wakes up, we will pull that tube.  And that’s exactly what they did.  The RT (respiratory therapist) thought it might be a rocky path for a few hours, but she proved him wrong and did great!  her sats are between 78-80, pressures are good, chest tube output is good, peeing well…

They are going to start feeding her just at 5 cc’s an hour continuously to see how she handles it.  The one thing I am worried about it that darn chylous effusion. If it is going to be a problem, it will show up pretty much right away. If there is chylous ( a milky substance leaking from her lymphodes) showing up in the chest tubes, they will have to stop the feeds and wait a few weeks for that to heal up.  Oh how I really don’t want that to happen again. 

She actually woke up, looked around and was trying to make some noises although her throat sounded really sore and hoarse.  But she wasn’t as pissed off as she has been. She is doing fantastic!

We got to go the Buchmann’s for some dinner and have the kids play.  IT was a great time.  Thanks C and M!  The kids were sooo happy to be able to see their baby sister today.  There was also chocolate here (thanks Hoesly) and Spongebob was on TV…it was a slamdunk! Oh and we finally got a room at the Ronald McDonald House…phew.

Here’s to another fantastic day!

Love,
teri

Comments { 6 }

One chest tube out

The middle chest tube has been pulled!  2 more chest tubes to go.  They want to wait until they start feeding her to make sure there won’t be any fluid collection.  This is where we ran into trouble last time where the drainage was substantial and the chest tubes had to stay in for a month or so.  We are praying and praying that this doesn’t happen again.

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OK so I was wrong

I can admit it. She had a really rough night and is not getting extabated this morning.  They tried to wean her off the nitric oxide and oxygen over night but her sats kept falling into the 40′s, so they got no where.  She needed quite a lot of narcotics to keep her comfortable last night, which also interferes with getting extabted.  But Dr. hagan thinks we will get there today. She is only 1 notch away from being where she needs to be.  The nitric oxide is at 2 and it needs to be at 1, her oxygen is at 55% and needs to get down to about 40% in order to extabate.  We are almost there.  Her sats are hanging in the upper 70′s now, and CO2 is at 52, which is perfect for her.

Barnes (one of the PA’s) just came in to take out the LA line (one of the heart lines to monitor pressures in the heart) and sometimes there can be bleeding, and there wasn’t!!  We are one line down!  Goal today is to get her extabated. Possible tomorrow to get those chest tubes out and then we will be rockingand rolling.  I know she is fighting this…she is incredibly pissed off. I talk to her and she calms down and we have wonderful nurses today that take such great care of her: thanks Debbie and Amanda.

The kids are coming up today to we can spend time with the Buchmann’s. The hospital has discontinued the H1N1 policy of no sibling visitors, so the kids can come and see her.  Hopefully she will extabted by then so they can see her face.  Looking forward to walking around downtown Milwaukee with our good friends.

Love,
Teri

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Quick night cap

She is doing well but boy she is not happy.  She is kicking those chub legs showing the docs who is in charge.  I know in my gut she needs to be extabated.  She is ready.  Those numbers they have been watching are right where they want them. She is totally breathing over the vent and it is pissing her off.  Unfortunately, they don’t like to do any major events, like extabating, overnight when they are not as heavily staffed.  They will if they need to, instead they just want to watch her for a few more hours and get those narcotics weaned down. I think we will rise and shine to a vent free baby.  let’s hope so.

After that happens, they will remove the LA lines into her heart which COULD cause bleeding so they wait to get those chest tubes out for about 24 hours after that, then they slowly get all the art lines out of her feet and wrists, take out the jugular line in her neck, get her on home meds, get feedings under control THEN we will be out of here.  There is about a 5 % chance she could get out before Christmas, but we are certainly not counting on that.  They keep reminding me of the possibilty of infections…oooh those nasty infections.

Good night!

Love,

Teri

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Slight improvements

Gabi is doing really well. Poor thing keeps waking up and trying to open her eyes…just go to sleep baby girl. Obviously sedation has been a problem. She is now on fentanyl, ketamine, and dex for sedation.  She is a tough cookie fighting through all of this. 

Those 2 #’s, the CVP and LA are slowly improving.  This morning they were both in the 20′s and now the LA is down to 9 and the CVP is at 16.  They need the LA to be around 5 and the CVp around 15 before they can extabate.

The plan tonight is to slowly wean her off all of the narcotics, which will  not be easy to see.  They also want to wean/turn off the Epi drip and the milrinone, heart meds. Shei s peeing well and her sats have now reached 80.  Doing great Gabi girl.

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No extabation today

OK, so it’s not 20 hours post-op yet, I apparently don’t know how to tell time. We even got a hotel room last night so we got some sleep; I just don’t didn’t do the math right.

Anywhoo- nancy came in and decided that those 2 numbers we are watching carefully, the CVP and LA, are still too high to be able to extabate.  She needs to diarese more…meaning more pee to let go of some fluid.  Dr. Hagan seems to think that because of her positive H1N1, her lungs might not have been fully recovered so she just needs a little extra support.  Overall, they think she is doing fine…just slow and in Gabi’s time. They say maybe in the next 18-24 hours to extabate.

Comments { 1 }

20 hours post-op

Nothing really that new.  They are watching 2 specific #’s carefully, the CVP and the LA which measures the pressures in her arteries.  The numbers are a bit high because her heart is still getting used to the new plumbing.

The goal today is to get her extabated. The game is to keep her comfortable enough but also get her more awake so she can fully breathe on her own. She is breathing over the vent at 60% oxygen, we breathe 21% oxygen, so she is getting triple a normal amount. Her sat are in the mid 70′s, not great but acceptable.  So, they need to wean down the oxygen levels of the vent, get her fentanyl and dex drips (the narcotics) off and then pull that tube out.

Except for the intabation, this is all “as expected”  and they think getting her extabated will help everything.  She is peeing decently and is remaining pink, so we’ll see.

My tough girl is hanging strong.

Comments { 2 }

Morning update

hanging strong.  She is still intabated and still on quite a few drips but the plan today is to wean her off some of those and get her extabated by this afternoon. pray it all goes well. Chest tube output is about 10 cc’s an hour, which is appropriate.  She is off the pacer wires which means her heart is beating at its own pace and her rate is staying around 120 which is perfect.  She keeps waking up but she is on plenty of sedation still to keep her out of it.  She is doing well. Praise God!!!

Comments { 4 }

9:50 and back from the OR

She is back from the OR and looks good. It is incredibly difficult to see her with chest tubes and art lines and central lines again. She started to wake up and kick her legs and do that horrible silent cry until Dr. Scott gave her enough sedation to knock out a horse.  She just wouldn’t go back to sleep. 

She is resting comfortably now and they will keep her confy through the night. The hopeful plan will be to extabate her in the morning.

We met another family here today that has a 3 year old that just received his fontan (the third stage that Gabi will receive) and the mother is pregnant, due in January with another little heart baby…tricuspid atresia and they will have to watch another one of their children endure these surgeries.  Just when you think you have it rough and are tired, turn the corner and there is someone else that is more exhausted.

Love,
teri

Comments { 11 }

8:45

We just got word that she will be back in her room (where we are waiting) in about 15 minutes.  Unfortunately, she is coming back intabated. Don’t have details about why yet.

Ann- you  crack me up!  Maderzack is here tonight. Don’t know about the music, but apparently Big T whistled quite a bit…and I met Caleb’s grandma in the lounge earlier.  I am sure we will chat with her again soon. Come see us on Saturday pleez, we are in 324.

Comments { 3 }

7:45

Dr, Tweddle and Kris just came in to let us know that she is closed and all set!  Mike M, one of the PA’s is just finishing sewing up the other skin layer.  He is the slowest of the PA;s because he is so meticulous, so it will still be about 45 minutes. Then the anesthiologist will wake up her up a bit and try to extabate.  We are so thrilled!!!!

Comments { 2 }

7:30

She is off bypass and doing great. her blood flow is awesome, sats are up to 88!  Normally the kids sats go down a little and are even more blue than going into the glenn, but of course, gabi is doing her own thing, but this time it’s in her favor!  They are watching her and checking blood pressure and then they will close her up and hopefully extabate her soon.

Comments { 1 }

6:00

So far so good.  The longest part of the surgery is getting through all of the scar tissue from her previous surgeries, but Big T.  is at the heart now and is about 1/2 way through with the actual Glenn procedure, which is attaching the right pulmonary atery to the superior vena cava to allow blood flow directly to the lungs completey bypassing the heart.  She has been on bypass for about a 1/2 hour now, about another 1/2 to go.  The last step will be to patch open her right pulmonary artery, which is narrow.  he cill cut it lengthwise, like a straw and use a patch to increase the diameter allowing more blood flow. This is very “common.” 

So far so good. Prayers are working!!

Love,
Teri

Comments { 4 }

4:15

First update we received about 30 minutes ago:

IV’s and lines are all in. She went to sleep just fine and is doing great thus far.  Kris, the wonderful surgical asst, comes out to give us updates and she wanted Big T to come with her to talk to us, but he was taking a power nap while the PA’s and the anesthesiologist do their thing.  Rest up big guy.  Next update will be in about 20 minutes.

We are in room W324 which is the room next to where Carsyn was. I hardly ever walk down to that end of the hallway anymore and I still have a hard time passing by her room. I look at it this way, Carsyn is Gabi’s angel friend and is bringing her strength and courage as she shines down on Gabi and her own family.  I know this must be a tough day for our friends too, as this is the path that Carsyn was SUPPOSED to have. 

Love,
Teri

Comments { 3 }

Today is the day

We are leaving in a few mintues.  The surgery is scheduled for 3:00 pm but we have to be at 1:00. Gabi is doing wonderfully this morning.  I gave her a good long bath so she smells nice for Big T…(Dr. Tweddle). We will update as soon as we know anything.

Thanks for all of your loving support!!

Love,

Teri

Comments { 9 }

Glenning it up

Here we are at what we hope to be a turning point. After months of “When’s the Glenn?…When’s the Glenn?” talk with the doctors we are finally here.The trouble is, we have to send her back in to be cut open. There isn’t a choice about it, but still doesn’t feel good. I was walking around getting ready for work this morning, enjoying having Teri’s hands around to help with the whip cracking (Ethan put your shoes IN your backpack, not next to it…Marissa, please stop chasing the cat under the tree, you are going to knock it ov—OH CRAP LOOKOUT!! Tom what do you mean “The toilet is deep?”).

I walked through the living room and Gabi lay in her bouncy seat, alternating her gaze between the Christmas tree and the pandemonium of early morning Danstrom-ness. She turned just as I was looking at her, and instantly went into a huge smile and tried to talk. She is slowing getting better at making baby sounds, rather than just grunting, and this time I got a full fledged baby coo from her.

I think back to when she came out of the first surgery on life-support and was just a deflated rag-doll with red ribbons running from her chest. Now she is a “real baby” and I don’t even see the O2 strapped to her face, or the stomach juices backed up from her G-tube. I just see a great, cheerful little girl that will be another fantastic addition to our family.

This is what makes this surgery different than the first one. We are all going to miss her. Maybe not at 2am, but all the other times. Thomas is so kind, and puts hand sanitizer on un-prompted when he wants to touch her. Marissa willingly shares from her bountiful collection of animals, and Ethan helps with the care whenever he can, asking questions all the while. The house will be empty while Gabi recovers in Milwaukee, and I am sure Marissa will ask “When is my sister coming home?”

We hope that this recovery is more typical, and we are back together again around the New Year. We are guardedly hoping of course, we have learned our lesson on that one for sure. We have the utmost confidence in the surgical team in Milwaukee, and know that we have made all the right decisions to provide the best possible care for our youngest daughter. I cannot explain how much I am looking forward to having the whole family back together again long enough to work into a familiar familial rut. Having watched other Heart Families get to this point and not end up as a complete family, we know there is still much that is undecided. The family that Gabi has help form prays that she does come home to be a part of it.

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Heart Mom

With Gabi’s upcoming surgery, I am once again scared and worried and realizing how sick she is.  I found a poem a while ago on another heart mom’s site, but I changed it quite a bit and of course, now I can’t find the original. I am so often confused with so many different emotions that are involved with having a sick kid that this kind of expresses them.

The Day I Became A Heart Mom

One day my world came to a screeching halt
We will never be the same.
They told us our baby was sick
I thought, “Was I to blame?”
I don’t think I can handle this.
I am not that strong.
It seemed my heart was breaking.

I have loved her for so long.
Why wasn’t the entire world coming to a halt?
Why were people still smiling?

Suffocating with confusion and fear
Please God, was it my fault?
I will not give up on this child.
I will listen to your advice.
I will give my daughter a chance,
No matter what the price.
We will learn all that we need to know
To help our baby thrive.

Will she ever feel the wind in her hair,
A jump in the pool, or wait for her first date to arrive?
Please God, help me do this.
Grant me with courage.
But why isn’t the world stopping?

I don’t want to hear idle chit chat.
I can’t hear about a healthy baby.
The anger becomes alive.
The confusion is exhausting.
The guilt of not being there for her siblings.
How much are they going to be sacrificing?
What if they have to watch their sister die?
WHY ISN’T THE WORLD STOPPING?


I have to accept our new destiny.
I watch my daughter sleep,
with her chest vulnerably exposed…

A nightmare a parent should never have to keep.
Oh the needles, the pain unopposed
Oh Lord, I just can’t know your way,
no matter how hard I try
And yet, I trust You hold her life
and guide us through each day
For our faith, we will never deny.

My mind prepares for her death,
but my heart begs, please let her stay!
From pacing the CICU floor
to sitting by her bed,
My feet ache, my back a stabbing pain
From wishing for a good nights sleep,
to learning every med.
From wondering “will she be alright?”
to a child’s bravery that would make a soldier weep
Oh why isn’t the world stopping?

We never asked for this
To think of all children that are sick
This hardship should never exist.
To learn a new compassion…
Couldn’t there be an easier lesson?

Our life was so good
yet I still complained.
And she can find a smile still
I suppose I too could.
The scar I trace with my finger
Is the door to her beautiful heart.
We love her the way she came to us,
And will love her until it is time to depart.

Her spirit will always be alive
Remember, “The flesh means nothing”
God must have known our love for her
Just as He loved us from the start
A heart mom is always a heart mom
Now wise beyond her years.

To watch our friends say good bye…
We share in your tears,
As your daughter takes her last breath.
Oh..the world just.. isn’t… going… to stop.
Every day I will remember and pray
We were chosen for her like many others
And the world goes on, like it always will
What these children have taught me I will never impart.
God took that anger from me and the world I stand atop
I shall always embrace that beautiful day…

When I became a heart mother.

**********************

Again, I wish I could take credit for the entire poem but I won’t. I changed it quite a bit but the original poem was written by Stephanie Husted. I wish I could find the original to include a link, but I can’t find it.

Anyway, I hope everyone is having a wonderful Tuesday!

love,

Teri

Comments { 8 }

Thursday surgery

Well they tried to get her in on Wednesday, but no can do.  The glenn surgery will be Thursday, second case, so around 1:00 pm.  We have been anticipating this surgery since the beginning. Nancy has always told us to get to the Glenn is a huge feat and then everyone can relax…well a little.  If all goes well, and I am just going to assume everything will, even though assuming makes an ass out of you and me, but there isn’t any benefit in worrying. I have to trust the doctors and our amazing God to take care of our little girl.  We head up on Wednesday morning for her pre-op appt…

Please keep baby Gabi in your prayers this week. She is doing so well and is so happy.

In the bumbo chair

In the bumbo chair

dsc_00131Love,

Teri

Comments { 4 }

Pictures

We are stil home and loving it! It was Ethan Jr.’s 7th birthday yesterday and we are so blessed that Gabi got to attend.

Click on the pictures to see them full size.

Happy Dec. 13th

Love,

Teri

Comments { 8 }

Home sweet home

We are home. I am loving the insanity and the messy house.  She slept pretty well last night, but is still really gaggy and pukey.  I REALLY hope that gets better after the glenn.

The schedule has changed a little. They had a canceled surgery on Wed. the 16th, so her surgery is moved a day earlier.  Her pre-op appt will be Tuesday.  So, we get 5 days home with her.   Woo hoo!  It is so wonderful to have her home. I will take some pictures today.

Thanks for the visit, dinner, and car last night to Brian, Nettie and Charlie.  SO great, as always, to see you 3!

Love,
Teri

Comments { 2 }

Guesswhat??

We are going home!  That’s right…we are heading home today for a week.  The surgery is still scheduled for Dec. 17th.  Her BNP is back up a little to 502, but that number is not going to get any better until after the glenn. So- I have some packing up to do.  So excited. 

Ethan jr’s 7th birthday is Saturday and I am so excited to have the whole family together to celebrate.

Thanks Chris, Michelle and nancy for dinner and a place to stay last night.  Love you guys.

Love,
Teri

Comments { 6 }

6 month birthday

Gabrielle is 6 months old today!  I can’t believe we have gotten this far.  I honestly cannot believe God has given the docs the grace and knowledge for us to still be able to care for her here in this life. She has beat so many odds, overcome so many challenges and yet still faces so much pain and so many struggles in these months, years to come.  But I know by the grace of God, He will comfort our fears and embrace Gabi and cradle her in His arms when I cannot. 

She is doing really really well today.  Her breathing rate has slowed, her nasal congestion is much better.  They are going to repeat her labs tomorrow morning, so we’ll know if her BNP continues to improve.  Dr. Rao and Dr. Hehir both agreed they would be OK with her going home for a little bit. I don’t really know what is best for her.  Ethan, Thomas and Marissa are like walking germs so I just don’t want her to get sick.  I don’t know what would be best for her. 

Hope everyone is preparing for Christmas!!  Can’t wait.

Love,
Teri

Comments { 5 }

Milwaukee, here we stay

Well, Gabi is not going anywhere. The results of that BNP test, the heart failure measurement, was slightly improved to about 462 compared with the previous measurement of 692. But with her increased respiratory rate and a continued elevated BNP, they have decided to keep her until the surgery. Dr. Hehir was happy with the improvement, although Dr. Rao (love him!) said that 400′s…600′s, no difference, she is still in heart failure.  What I was trying to make sense of is how is this related to her Glenn surgery.  Apparently, some hospitals use this BNP number (it’s something like nitrate peptides or something in your heart)  to use as an indicator of the babies needing the glenn surgery. SO- that number will improve with her next surgery.

The problem is, she has a cold. Nasal congestion.  They need her to be as healthy as possible to go into the surgery. It is 10 days away and she is really stuffed up.  We DO NOT want this to go into her lungs, if the congestion does go into her chest, Dr. Hehir says this could delay the glenn again, although Dr. Rao says it WILL be next week. It cracks me up when the docs disagree, but then again,why isn’t there a clear cut answer, kind of nerve racking.

She was up and smiling this morning for her PT/OT.  She looks good.  We gave her a bath and weighed her…she is up to 7.05 kilos (15.5 lbs.) my big girl!

The CICU has been relatively quiet for a few weeks now.  There are of course, our long term friends here, Ellie, Ash, Jaquion, Noah…among many others.

The snow is falling here already.  It is beautiful and I do love snow, but just not driving in it.  I love to have Christmas music playing, sitting by the tree with all the white lights sparkling, reading Christmas stories with the kids, drinking hot chocolate by the fire place…. hmmm sounds like a perfect evening, doesn’t it? To bad we don’t have a fireplace and I just know the kids would spill their hot chocolate, but I can dream, right?

Christmas is coming, can’t wait can’t wait!

110_0372

Love,
Teri

Comments { 15 }

Nothing new

…except my younger sister GOT ENGAGED!!  Yippee!  I am so happy for Beth and Jamie and all of their children. Sam, Marisa, Grafton and of course, my darling niece Ella.  We are very blessed to have the kids and Jamie be a part of our lives. Nothing like a good wedding to bring out the best in everyone! Now I REALLY have to loose those extra 20 lbs I have been storing for warmth. And I’m already hungry…this isn’t going to be easy. And what happened to the days where you just don’t eat for a few days, go for a few runs and drop 10 lbs instantly.?? I mean really, mid-30′s is not workin’ for me. 

Gabi is doing well. She is very sleepy today. They will repeat that BNP test tomorrow in the morning and hopefully she will be less in “heart failure”.  To help get that number down, they doubled her dose of captopril to see if that helps.  Possible discharge tomorrow, but I am not holding my breath.

We finally picked up our minivan that was stranded in Gurnee for the past month.  Before the car broke down, I wrote about 50 thank you notes and left them in there.  I was so excited to be able to mail them, but then thought they might be a little outdated. They were written before Thanksgiving so now they just sound ridiculous.  Oh well.  I WILL get them out soon.  I promise.  Everyone has been so helpful to us and I don’t want anyone to think I haven’t appreciated the thoughts, prayers, meals, babysitting, drivers, visitors, gifts, gift cards…etc. 

And how the heck is it already Dec. 6th???  I was totally planning on putting together a cute Christmas card with a family picture that, of course,  hasn’t been taken yet and now it’s just 3 weeks from Christmas!    Maybe we’ll do New Years cards when Gabi is home and we are all together. 

We had a blast at a neighborhood Christmas party last night, although we did miss the Saffords!  Thanks for the laughs my good friends, I needed them. Oh and thanks for the babysitting mom and the lift today.

I warned you all about my rambling…

Much love to you all,

Teri

Comments { 2 }

BNP up

We got the results of this ambiguous BNP test back and it was not good.  A normal kid with a normal heart would have a number between 15-20.  So, a good number for Gabi would be around 100. Hers came back at 592.  They have taken this test with her in the past and it was substantially lower then. So, they have to tweek her meds to get that number down.  I did sunction her nose out and bright green bugars came out, so she does have a virus which can make that number jump. This is a relatively new blood test so they don’t have a lot of great information to compare numbers with, but it is used often enough now to know Gabi remains in “heart failure.”  Wow, do I strongly dislike doctor terms sometimes. 

Dr. Hehir wants to keep her in the hospital unti lMonday, at least.  Some of the docs want to keep her until the Glenn.  We’ll see.  They also adjusted her formula to get  24 calories instead of 27 calories. She is plenty big now weighing in at 6.9 kilos. Dr. Hehir agrees that she just needs this next surgery.  So, they are just trying to keep her healthy and strong for that date…Dec. 17th.

Andrea, one of my most fav nurses (yes I still love you too Carianne, and Nicole and Anna and Heather and Molly and megan and the Beths) but Andrea did get me a laptop for the room, so she is now top on my list!! So, beware, there may be more ramblings than usual.

Gabi is hanging in there and certainly a trooper through this whole thing. 

Love,

Teri

Comments { 4 }

Discharge update

I just talked with Dr. Hehir and he explained to me that on the ECHO her heart was enlarged.  Her right ventricle, the only ventricle she has, is dilated and quite enlarged.  Because the right side of the heart is doing all of the work and it is not meant to, the muscle is working so hard.  After the Glenn, the blood is rerouted so that her heart won’t have to work as hard. She is breathing rapidly with moderate retractions.  He is checking her BNP levels to check to see how extensive her heart failure is.  They may need to adjust her heart meds to help in the meantime before the glenn.

He did say that the effusion (the fluid) looks improved, so that is good.  I don’t quite know what to make of this all.  She looks so good that sometimes I forget how sick she is and how fragile her life is. I suppose it is a good defense mechanism or else I just might not get out of bed.

Love,
teri

Comments { 1 }

Discharge tomorrow

The ECHO went well. I still haven’t received official word yet about whether or not the fluid around her heart has improved or not, but if there are not running into the room, then we are comfortable with it being OK.  She, unfortuanatly is coming home on O2. Her sats just won’t stay steady above 75.  Of course, Gabi does the complete opposite of what they expect.  When she is crying, usually babies sats will decrease, but Gabi’s go up.  When she is asleep, usually babies’ sats go up, but Gabi’s drop drastically.  Go figure.

So now we have these gigantic oxygen tanks with 30 feet long tubing with a nasal cannula sitting in our living room.  And she absolutely hates it!  She constantly is ripping it off her face.  Good times. But- It is only for less than 2 weeks before her next surgery, so we’ll make it.

In the meantime, we are getting ready and excited for Christmas.  Tree is up, stockings are hung.  OUr minivan is finally ready to be picked up. They had to rebuild the engine and fix some other odds and ends.  But it is ready. So- thank you thank you Nettie and Brian for the car during this time period!

Oh and thank you sooo much Rachel for the generous offer of the print from your husband.  i love his website. He looks very talented.   I will be in touch soon about it. Thank you!!

Love,

Teri

Comments { 0 }

Christmas in CHW

Well, they made the decision early. The glenn is defintely going to be on Dec.17th.  So, we will be in the hospital on Christmas.  What a bummer. Nancy, Dr. Hagen and others spoke with Dr. Hoffman, the chief of anesthiosology, and he said he would in no way be comfortable with putting her on bypass during open heart surgery only 2 1/2 weeks out from H1N1.

The second ECHO is now scheduled for Friday morning. They will do a quick effusion check (looking for fluid around the heart) to see if it has improved.  If is has improved, she can go home. If it is the same or worse, she will have to stay here.

Two other side notes:

  1. Our wonderful friends and neighbors who have helped us in so many ways through these past few months have officially adopted their little girl in China!!  Steve is in China now and is hoping to return with Meghan in another week or so.  Their blog is luckyplumflower.typepad.com.  We are soooo happy for them.  What a Christmas blessing!
  2. Our other tremendous friends, the Buchmanns, yes Carsyn’s parents, have officially put together an endowment fund to benefit the cardiac ICU at CHW.  All of the money will go directly to the cardiac floor.  They will be able to purchase simople things, like a bouncy seat for each room, or a laptop computer for the parents to use in the rooms, or any equipment the docs need. The fund is entitled Wings of Angels Endowment Fund in memory of Carsyn. And Ethan designed the logo, which I particularily like.  I can’t get a picture up from the hospital but will when I get home later tonight. Their first event is going to be March 6th in Milwaukee.  We are all so looking forward to it. Chris and Michelle are looking for things to auction off, so if anyone has anything to donate, please let me know.

Thanks everyone.  Gabi is still smiling today!!

Love,
Teri

Comments { 3 }

No Decisions yet

They did an ECHO thi morning to see her heart function.  Nothing surprising was seen with her function, her left Pulmonary artery looks “awesome” but her right PA is narrowing and slightly smaller. They do see this quite often with hypoplast kids so they can fix this. her aortic arch is ”beautiful.” They also did see some fluid around her heart. There really is no explanation for this and no signs of it either.  Her heart rate is fine, she has no signs of infection.  Once again, the docs are stumped.  The fluid appears to have been there for a while because the doc said she saw strands within in the fluid.  They are going to do another ECHO on thursday to see if it is going away, getting worse or just sitting. They gave her another dose of lasix today and will also give her ibuprofen to reduce any inflammations that may be there.

The docs have their conferences a couple of times a week to discuss upcoming surgeries.  Gabi is on the list for that conference on Thursday morning.  Thursday will be a big day and we BETTER get some answers.  In the meantime, she looks great, quite blue, but great.  She is smiling, content and starting to roll around in her bed like crazy.  The nurses couldn’t believe how much more active and mobile she is. She did get really strong being home for just those 10 days.  She needs to be strong to keep up with her brothers and sister. 

She is such an unbelievable fighter and I know she will get through this. Even if they do keep the date of the glenn on Dec.17th, there is a light….there is a light.

Thanks for the support and love!

Love,

Teri

Comments { 2 }

Possible Glenn surgery sooner

They swabbed Gabi for every virus known (RSV, Influenza A and B, and many others) and they all came back negative!  They also took blood cultures, even though she hasn’t had any fevers, and those have come back all negative also.  She is also much bluer than she had been.  Literally, she looks blue because of her low O2 levels.  She is still on O2 and since there isn’t an explanation for the lower sats, thety are considering doing the Glenn earlier than Dec. 17th.  Lower sats and cyanoic (blue) are both signs that she is ready and needs the surgery.  They are making decisions today.

I have been so anticipating the glenn for so long because after this surgery, things apparently get much easeier. She is less critical and less pukey.  But on the other hand, it is another open heart surgery, so it is terrifying.  Trust trust trust.

Love,
Teri

Comments { 4 }

Back at CHW

Well, Gabi is back in the hospital.  At home, her O2 sats fell into the low 70′s/high 60′s, which is really low.  She caught a cold and was all stuffed up.  I called yesterday and they told me to drive her up.  She is on O2 and they swabbed her for viruses.  She is doing OK, but certainly plenty crabby. Dr. Hagan said this COULD be a short stay, but they said that last time.

Her glenn is still scheduled for Dec. 17th.  I am going to ask them if there is any way to do it sooner.

Sorry for the lack of posting.  Gabi didn’t sleep much at home, so I was a bit tired and busy.

Love,

Teri

Comments { 4 }

OOPS!

Well, I figured out why she was loosing weight.  I was mixing the formula wrong.  A big oops.  At least I figured it out, right?  She has a special recipe that I have to mix up to give her additional calories and I totally screwed it up.

Just overnight, she already gained back 40 grams, even though I felt like she puked the entire night.  She is up to about 6.6 kilos, which is about 14.5 lbs. She is a little peanut barely making it into the 13th percentile. I am so used to my kids being above 80th percentile.  She will be our petite little girl.

We are hosting Thanksgiving with my mom, sister and dad, so it will be very busy here.  If I don’t post before then, Gabi is doing fine. ANd I hope everyone has a wonderful and very blessed Thanksgiving!!!

Love,

Teri

Comments { 2 }

Still home

WOW!  It’s been a long time since I posted.  So sorry.  We are doing great.  A little tired, a lot crazed, but it is wonderful being home all together.  Gabi is just so happy to be here.  She is so smiley and getting so active. Her sats are maintaning well between 75-80 and she has lost a little weight (shhh!) If I call it in, I know the docs will totally freak out, so I am giving her another day or so.  I know she is doing fine…I know her so well by now.

Because she is on continuos feeds throughout the day and night, her tummy is quite sensitive, which means we don’t get much sleep around here. After the glenn, I am hoping that will get better. That’s what I have been told anyway.

The glenn is still scheduled for Dec. 17th.  They say the average stay for the glenn in the hospital is only 5-10 days. But they said for the Norwood (first surgery, it would be between 4-6 weeks and we more than tripled that! So, to not let ourselves down, we are just expecting another month stay.  Which is not bad!!

Thanks for all the thoughts, prayers, good wishes.  We are all doing great.  The kids ADORE her, much more than I thought.  Her leaving for the Glenn is going to be very difficult for them.

I can’t help but anticipate another emergency.  But we’ll get through, whatever each day brings for us.  We are just so blessed to have her here at all. She has certainly beat a lot of odds thus far.  She is one tough cookie.  I know God has big plans for her.

Love,
Teri

Thomas loves his baby sister

Thomas loves his baby sister

So happy

So happy

Comments { 6 }

Rough night, but doing great!

Gabi is doing really well. She was a little shell shocked yesterday when we got home and Marissa and Thomas were smothering her with kisses. I wanted to say…don’t touch her!!  I just don’t want her to get sick.  She was up quite a lot last night gassy and puking, but still smiling.  I will post pictures later today.  She is so happy.

Our first home nurse appt is this morning.  And of course getting the kids to school this morning was interesting, but we made it…thanks to Heather, once again.

Thanks for checkin’ in.

Love,

Teri

Comments { 8 }

Surprise!

I didn’t want to say anything to jinx it but…..SHE IS HOME RIGHT NOW!!!

They discharged her officially this morning and we ran out of there as fast as we could.  She is home with her brothers and sister, Mommy and Daddy. Once again, we are all together.

Because of the viral infection she had, they had to postpone her Glenn until Dec. 17th, so unfortunately she will probably be in the hospital for Christmas.  But if all goes well, we will have a full month with her home.

Thank you all for the support and sorry for the lack of posts these past few days.  I just really didn’t want to jinx anything.

Love,
teri

Comments { 10 }

Ironing out details

Gabi is doing fantastic!  I am waiting for rounds this morning.  They are discussing when the Glenn will be. Technically, after a a viral infection, they have to wait 4-6 weeks for the lungs to fully recover.  However, she may outgrow the shunt before then and I just know at home, with the 3 kids, she most defintly face at least another cold.  We’ll see.  The H1N1 swab they did yesterday has come back negative, which is outstanding news.  Still in isolation, off of O2, still on tamiflu for at least one more day.  Haven’t even asked about going home, but I know the thought is on the table.

Love,Teri

Comments { 4 }

Fighting through

This will be short, but Gabi is doing AWESOME again.  I honestly think she had the flu last week and by the time the swab came back positive she was recovering already.   She is now off the antibiotics and they are going to reswab her on Monday.  And get this…they even said she could go home soon.  Seriously?  These rollercoasters are killing me!  But, I will certainly take the up ones as often as possible. We are all sick at home so my mom was able to go up to visit with Gabi so I was able to stay home with sick kids and recuperate myself.

Last night, I heard a knock at the front door and assumed it would be Heather, our dear friend and neighbor, or Kari from across the street, but no, it was my dear friend Sarah that drove up from Oswego to help out.  She cleaned my kitchen, got the kids dinner, ran a few errands. It was so wonderful to see her and have her help out.  Thank you for surprising me Sarah!  we love you.

As of right now, the Glenn (the second surgery) is very tentatively scheduled for Dec. 3rd.  I think a lot is based on how she does in the next 2weeks.

Love,
Teri

Comments { 5 }

Influenza

We got a call in the middle of the night last night from the nurse to inform us that Gabi tested positive for Influenza A which includes the H1N1 virus. They put her on tamiflu which is an antivirus, which can help fight off the virus if it is caught within the onset of the virus.  She is now on complete isolation and they moved her to a negative room which contains all the germs within the room.  Our angel friend Carsyn was in a positive room after her transplant which did the opposite.  A positive room pushes all of the germs out of the room. She will stay on the tamiflu for 7-10 days.  Her course of antibiotics is done today so they will finish the doses today and then take her off of those.

I am going to talk to Nancy later this afternoon to see what this means for our dear Gabi.  I know they will not even consider the Glenn until all of this is cleared up.

The fluid in her lungs could be related to this flu but it also could be related to her poor cardiac function.  They are guessing that the ascitis, the fluid in her abdomen, was unrelated to this flu. With all these different variables, it is difficult, nearly impossible to know what symptoms are related to what. We are just taking day by day at this point.

Love,

Teri

Comments { 7 }

Swine flu swab

Good news is Gabi is doing great.  She looks good, but she did have kind of a rough night with her sats bottoming out in her 30′s. The fluid in her lungs seems to be improving which is great, although now they have no idea why she is breathing so fast and hard and why her sats are dropping.  They are swabbing her for swine flu, regular flu or any virus. 

They are also putting her on the schedule for the Glenn.  It may be as early as next week. I think that may be what she needs.

Will post soon again,

LOve
Teri

Comments { 4 }

Improvement

Gabi is def. showing signs of improvement. We are so thankful that the fluid is still negative for any bacteria.  Like Ethan said, if it was parintitesis (sp?), it could have been really bad.  But…it is not!

The fluid in her lungs seems to be a seperate issue related to the infection in general and being intabated many times over the course of a few weeks.  Turns out the fluid wasn’t really the issue that was causing her to breathe so quickly and hard, it was the fact that part of her left lung was “down”.  Basically, part of her lung collapsed.  The treatment for that is pressure in the lungs.  Crying really hard is one way to literally pop the collapsed pockets back out. Another way is to give her treatments of CPAP, which she does not handle well.  I remember she had this same issue when she was first extabated many months ago and she recovered fully.

Last night when I left, she wasn’t peeing well and her O2 sats were way down into the 60′s.  The docs ordered a dose of lasix to help her pee off some of the extra fluid in her belly and lungs and she peed like a crazy drunk horse and now things are much better.  She is finally able to eat again, so that should improve her overall system in general.

These past few days were incredibly difficult. I hadn’t been afraid for her life in many months.  But she has shown me to keep the faith and really how strong she really is. She is not necessarily out of the woods yet and although she is improving and fighting off this mysterious infection, we are trying to cope with the fact that we’ll most likely never found where it came from. We are just so thankful that as of right now, the VP shunt doesn’t need to be externalized again. Phew!  I might have had to strangle neurosurgery.

To admit this is quite indiscreet and maybe even reckless, but the past few days, I felt very angry with God.  Sometimes, I get so consumed with what we are going through, I feel like we are the only people going through something like this. But there is a so much pain in this world. After watching the memorial in Texas yesterday and being surrounded by sick children, I realized how much people suffer in this life. And who am I to feel sorry for myself? I have to SO much to be thankful for. God is there to provide strength and courage and just because things don’t go the way we want, He is there.  And He gave us the strength even though I was so angry with Him. I think all of your prayers carried us through this past weekend. And I know difficult times lay ahead again and I will probably get angry again, but I know one step at time, holding my husband’s hand and God always at our side, we can all get through our painful times. All this pain and suffering has a purpose and I wouldn’t change the fact that Gabrielle is our daughter for anything.  I will take her as she is and love her for what she is. And I will not question God because our Gabrielle has a purpose here, even though we may not understand it.

“I know that You can do all things, And that no purpose of Yours can be thwarted.” Job 42:2

We continue to feel so blessed with our wonderful friendships, new and old.  I came home last night to the babysitter, our gift from generous relatives, 2 pizzas delivered from a friend that I miss dearly and voicemails from friends and family that were just thinking about us. Thank you all.

Love,
Teri

Comments { 5 }

To fight another day

So far the test have come back negative. It is possible that there WAS an infection, but since they put her on antibiotics right away it had cleared out before the pulled the sample to test. This is likely good news. If there was a persistent infection in the abdominal wall things would have been pretty bad. Under normal circumstances I was finding 40% fatality if it was able to be treated very quickly. I couldn’t find anything about numbers for a girl like Gabrielle.

The fluid in the lungs is holding steady, and they are doing another chest X-ray today. They are pretty confident that things will pop back (her one lung is a little “flat”), and a similar thing happened when she was exabated the first time, and eventually she recovered completely. I think it was the series of intabations with the multiple brain surgeries and the MRI that just became more than she could bounce back from. If the lungs don’t look better today they will do a little CPAP action to pop them back open a little.

Teri says that Gabi looks pretty good, which is much better than what I heard in her voice a couple of days ago. Teri and I think that maybe we need a really long course of antibiotics to make sure everything is clear. IT seems like maybe the antibiotics are being shut down a little early, and then after a couple of days things go all haywire again. That is our opinion, and it will be interesting to see what the real doctors think.

Comments { 4 }

Frustrating mystery

She is back from IR, interventional radiology where they preformed a procedure called paracentesis.  Gabi has ascititis which is fluid in her abdomen probably from an infection. paracentesis is  when they put a needle in her stomach to drain and catpure a sample of the fluid.  They were able to drain 10 cc’s of fluid and her stomach already looks a little less swollen. They sent this mysterious fluid to the lab to get tested for bacteria growth, white blood cell count among many other tests.  From this they will be able to get additional information about where this infection is coming from.  They are suspect of the VP shunt again.  Dr. Berens fears it may be parotinitis, an infection in the abdomen lining.  This would require lots of antibiotics and of course, to externalize the VP shunt once again. She is still NPO, nothing to eat. SHe is getting IV fluids and did get a blood transfusion this morning.

She hasn’t had any fevers for 48 hours and her white blood cell count is coming down and the CRP is also coming down, which is good.  Clinically, she looks good.  Heart rate is staying steady and low. She is still on O2 because there is also fluid in her lungs, which seems to be a seperate issue.  She is breathing rather hard which is making me quite nervous.  Last night, they were watching her closely concerned they may have had to intabate her for fear she might crash.  She has been breathing very hard and is getting tired.

I am trying not to be afraid, but I can’t help but think about the worst.  She has a bad heart and I am so scared her little body just can’t take all of this. Hopefully we will get more information as the day comes to an end.

love,

Teri

Comments { 10 }

From the top turnbuckle

They will be taking her down to Radiology today to drain the fluid in her abdomen. She is first on the schedule, which is nice so that this gets done first thing, but scary because the doctors think she has to be first. Teri said she was resting relatively comfortable last night, and trying to sleep. Her belly is all distended from the fluid, and I hope that after the drain this morning things will start to improve in that department. The doctors think that the infection is causing this fluid build up, and so far I haven’t heard a tie in with the puss they found when they tried to internalize the brain shunt a couple of weeks ago. The fluid in her lungs isn’t the same as the fluid in her abdomen, but it seems like another side effect of the infection. She is getting regular chest x-rays, so they are keeping a very close watch on that.

Right now Teri and I are pretty worn down, it was quite a body slam to go from coming home in the morning, to worrying of she is ever going to come home again. My friends Nettie and Brian were able to hang out with me yesterday, so I wasn’t left to myself and my thoughts for too long. I am very grateful that they did stay, despite the pretty sub par kid behavior all around.

The other three kids are doing alright, but it is really starting to wear on them. Having Teri leave suddenly when she had just gotten home was pretty jarring for the whole family. They just want the parents back home, and it is really painful to not be able to give them that right now. The neighbors here have been a godsend, and I have no idea how we would survive without the help we have gotten from all our friends and family, but I hope Gab can pull through this and we can be a more normal family by Christmas time. That would be the best gift we could ever get.

Comments { 2 }

Wrong direction

Good news is that the fluid they pulled from the shunt didn’t test positive for anything. The bad thing is that there continues to be fluid in her lungs, and she is very uncomfortable. They did an ultrasound on her abdomen, and found a lot of fluid in there that they didn’t expect to see. Teri cut her weekend short and is on her way back up there right now, and once we know more we will update.

Comments { 3 }

So so extremely…

…disappointed, heartbroken, discouraged, angry, sad, confused, tired.

She is not coming home today or in the near future.  Gabi spiked a fever last night. They have started another course of antibiotics and are investigating where the fevers are coming from.  We are waiting for results from blood and urine cultures, blood counts, CRP counts.  From those they can determine if an infection is and hopefully determine where it came from. 

She also pulled out her G tube so she hasn’t been able to eat anything since yesterday.  Surgery tried to pop one back in but by the time the nurse found it out, the hole had already started to close. We are waiting for her to get down to IR so they can replace it. 

I don’t understand why this is happening.  I don’t understand a lot of things in this life, but I trust in God that He has a plan. Somtimes it is more difficult to find that trust and have faith. We will find it.  I know we will.

Love,
Teri

Comments { 7 }

Discharge plan!!

MRI went well.  She is coming home tomorrow morning! We are so excited, so blessed, so grateful.

Love,

Teri

Comments { 4 }

waiting waiting

We waited all day to try and see if she could be added on to radiology’s schedule for an MRI today, but it didn’t work out, even though I harrassed the docs all day.  She will be first case tomorrow morning.  She will need to be intabated and fully sedated.  The procedure should take about 2.5 – 3 hours.  They need to be able to hold her breaths so they can get a clear picture of blood flow, pressures…not sure what else.

After she is intabed, she usually needs extra O2 to boost her sats up a bit, but hopefully only for a few hours. They need to keep her for 24 hours after the procedure for observation then she can…..COME HOME!!! 

The discharge plan is set for Saturday morning.  We are praying and praying that nothing stands in our way to bring her home for at least a week or 2 before the next heart surgery.

Thanks for all the support. Gabrielle certainly is a fighter and a tough little cookie!

Love,

Teri

Comments { 4 }

MRI

Gabrielle is having a great day so far.  last night, she threw up a couple of times, so they had to put her feeds on hold and she was sooo happy to have an empty stomach!  Poor little thing. Obviously, she has to eat, so the docs are watching her closely for more vomitting and irritability with an upset tummy.  After her Glenn surgery, the feeding thing apparently gets MUCH better. There will be more blood flow to the stomach and she will be able to digest food quicker. They are waiting to hear a definitive result from lab about her cultures. It  has been about 47 hours since her cultures have been drawn but they have to wait a full 48 hours before releasing an official result.  So far, the results are still negative.  Then they can discontinue the antibiotics.

The new info today is that Dr. Cava IS in town afterall, so they are trying to schedule her MRI for tomorrow or Friday so we dont have to come back and do that as an outpatient.  This will get her all ready for her Glenn procedure later this month.

My incredible new friends, Chris and Michelle Buchmann (Carsyn’s parents) are putting together a new foundation to help the cardiac unit and heart families at CHW. Their first project is to build a beautiful garden on the hospital grounds so families can find a peaceful place to bring their children.  Their greatest moment with Carsyn was when they got to bring her outside, so they are determined to build a serene place for families to retreat to.  I am so looking forward to help them with this project among many more future needs.  So, be on the lookout for fundraisers coming up this winter.

I can’t wait to be able to report when we will be heading home because it looks like it may be soon!!!

Thanks to Rita and Marlene and Sally and heather and Shelly and the Buchmann’s for dinners, rides, babysitting, just being a friend to turn to. We truly are very blessed.

Love to all,

Teri

Comments { 0 }

The next few days

Gabi is doing really well. Her white blood cell count was a little up yesterday from results of a standard blood draw.  So, they drew cultures but nothing has grown yet and her CRB (I think that’s what it is called)…it’s a measure of inflammation in the bloodstream, and that number actually came down, which is great news.  So, they continue with the antibiotics for 48 hours after the cultures were drawn, whcih was yesterday morning.  Hopefully nothing will grow and they can discontinue those antibiotics and get that PIC line out. 

Her heart rate is a little elavated and they are contributing that to withdrawal. But she hasn’t received any morphine since last night, and now that i am here I can hold her and comfort her with normal baby consoling rather than just giving her drugs. 

They wanted to do the MRI before she was discharged this time but Dr. Cava is out of town until next week, so IF we get to go home soon, we’ll ahve to come back for a day/possible overnight trip next week. This is her pre-Glenn procedures.

That’s it for now.  She is doing really well and I am praying like crazy that we can bring her home later this week!!!

Thanks, much love to everyone and God bless!!
Teri

Comments { 1 }

Pictures

The withdrawal is quite stubborn.  She is really not happy today and now her white blood cell count is up. Luckily she is already on antibiotics.  She is scheduled for an MRI tomorrow.  HOPEFULLY she will not need a pre-Glenn cath also.  We’ll see.

Here are some recent pics of Gabi.

This is the external shunt coming out of her head.  Looks comfortable, doesn't it?

This is the external shunt coming out of her head. Looks comfortable, doesn't it?

Playing with her zebra

Playing with her zebra

The new internal shunt

The new internal shunt

Looks much better

Looks much better

Love,
Teri

Comments { 5 }

A good outcome

Yesterday morning was another morning of unanswerable questions.  Gabi had a really irritable evening and night, throwing up quite a bit and just inconsolable. The nurse gave her a dose of morphine at 8 am Sunday morning and it did wonders for her!

So, she was irritable, vomitting and her incision on her head from the shunt placement was quite red. The nurse thought it looked puffed up, but I disagreed, it didn’t to me.

With those symptoms in mind, the docs had 3 possible ideas of what it was:

1. A shunt malfunction
2. An infection in the shunt/incision

Dr. Scott was quite confused with her symptoms because she had no fevers. He decided to order a CT scan of her head to make sure the shunt was working and labs drawn to check her white clood cell count. I truly thought I was going to loose my mind. I called Ethan at home and we both were so overwhelmed that we decided to just laugh and turn it over to God.

The blood count came back normal and with that, Dr. Scott came into the room and had another thought: withdrawal. She had been through 3 surgeries in a week with heavy narcotics and the way the morphine helped all kind of made sense. She was so comfortable with the dose of morphine. she was just looking around and content as could be.  But they had to rule out a shunt malfunction first with the CT scan.

It came back normal!  Phew.  I wasn’t sure if neurosurgery was going to live if the shunt had already malfunctioned.

So, they are monitoring her withdrawal scores and giving her morphine as needed, but yesterday she only got 2 doses in 24 hours, but hopefully within a few days, she will be OK. There was a little confusion whether or not to discontinue the antibiotics.  Nancy decided to continue them for a few more days.  With all of her upcoming procedures, they wanted to make sure everything was as sterile as possible.  Nancy was at home yesterday but I called her on her cell phone and I was so reassured.  I am so thankful that these docs dedicate their lives to our children.  Nancy treats the hypoplast kids like her own. The fact that I can call her at home to get answers really says so much.

Gabi is doing great!  We are so thankful. Nancy is discussing Gabi’s upcoming procedures with her team and Dr. Tweddle, the surgeon today.  So, we will get answers and a tentative schedule soon.

Our minivan is still getting repaired, but thanks to the help of neighbors, friends and family, we are making it work. Thanks everyone!

Love,
Teri

Comments { 2 }

Halloween night cap

OK… I have to apologize for my pity party lately.  I love this:

I had a thought…today…Gabi did celebrate Halloween..she’s a superhero!!! A true and brave superhero! She is SUPERGIRL! She had her siblings who were out there getting her candy so when she has teeth she can try some…from home!!!

Thanks Lisa!  That is awesome.  Now I am picturing her in a supergirl costume and it is cracking me up.

Thank you everyone for lifting me up.  SOmetimes it feels like we are the only people that have ever gone through this, but wow…so not true.  Gabi is doing great and she may get to come home soon.  So, I will quit complaining. My kids had a blast with their amazing Dad and great neighborhood.  They didn’t even miss me, which makes me so happy!

Much much love and hope everyone had a great Halloween!!

Teri

Comments { 3 }

Happy Halloween!

HAPPY HALLOWEEN!!  Gabi is doing really well today.  I spoke with the neurosurgeon again and he is very pleased with her progress. Her numbers look great and she is resting comfortably.  The fluid that he saw in Gabi’s abdomen which caused him to pause was still there but much more clear. I think they have all concluded that it may just be her anatomy and that because her heart isn’t as strong as it should be, there may just be fluid collecting. They did give her a few doses of lasix to try and get rid of some of the fluid and she has been peeing like crazy. 

Nancy and the cardiologist said she looks great from a cardiovascluar standpoint, so they are communicating closely with neuro to find out what the next few days will look like. She is still on vancomycin and I think all the docs are passing the buck so to speak about who is going to discontinue it.  I think someone will pull the trigger tomorrow because there are no signs of infection.  Her blood work all looks great again. 

She has her cath scheduled for Nov. 9th and I asked if she could come home for a little before that and Dr. lew, the neurosurgeon didn’t have a problem with it and I don’t think Nancy will have a problem with it either.  So, I am going to push for her to come home soon!  She needs to rest and be home with her family before this next procedure and another heart surgery approaching. 

The hospital is very quiet today but the few kids that are here are absolutely breaking my heart. It is especially difficult being here on a holiday… be it Halloween, a birthday, Memorial Day or Christmas, a child does not belong in a hospital. It just isn’t right.  I wish I could be there when my kids get home from trick or treating and watch them dump out their candy and sort it all out like we used to do when we were kids.  And I can’t stop thinking of my friends that are out with their girls trick or treating and their third daughter should be in the stroller with their Daddy on the sidewalk dressed up as a pumpkin, or a lion, or a bumblebee. It just isn’t right. 

I hope everyone is treasuring the moments they have with their children as they dress up in a silly costume or a scary one or are now too cool to dress up. Even if they drive you crazy with their silliness and sugar highs because they never ate any dinner, enjoy those moments.  I know my friends Chris and Michelle would do anything to spend another moment with their daughter. And I would do anything to bring Gabi home and listen to the craziness of the house and the neighborhood.

As I sit here with Gabi alone listening to the monitors beep and watch the leaves blow around the parking lot from the window, I know betters days are ahead, but this is really a tough day.

Love,
Teri

Comments { 2 }

Good Graces!

Finally some good news!!  Gabi’s surgery went fine.  Her VP shunt is completely internalyzed now and she is handling the pain like a trooper. My mom is in Milwaukee so someone is able to be by her side.  I am so thankful for that.

Tomorrow I will head up and find out more about the infection and the next step.

Thanks everyone for your love and support.

Love,

Teri

Comments { 1 }

Brain surgery under way

They took her a little late.  She just got into the OR at 2:00.  Hopefully we will get good news after.

Thank you for all of the offers for cars, and help. We are trying not to loose it and waiting for news about when the car will be fixed so I can get up there.

To think of her waking up and me not being the first face she sees when she gets back to her room makes me sick to my stomach, but she can handle it, I know she can.  And the nurses are wonderful…even though we got shafted up to 4.

Teri

Comments { 1 }

Brain surgery with no car

Our days just keep getting better and better. So, I am racing home last night from Milwaukee to get to Ethan’s first grade concert that he has been practicing for since the start of school.  It starts at 7:30. Crusing along, thump, engine light on, I cannot stear, accelerate or break. You know that song by Carrie Underwood, “Jesus take the wheel.”  Literally that was me. I managed to get over to the slim shoulder in the midst of construction. Cars whizzing by me as the entire minivan is shaking so tremendously I thought it was going to blow over.  Long story longer, the car is in Gurnee waiting for repairs.  Thanks to my WONDERFUL neighbor and great friend, Heather, I was able to get home, but not in time for the concert. I found some grace in the beer I had at Chili’s where the tow truck dropped me off as i waited for Heather. A nice cold beer and a hefty laughter eases a lot of the pain.

So, now I am stuch at home scrambling to get Halloween costumes ready for the kids’ Halloween parade, talking to mechanics about warranties and get a call from the NP that they are taking  Gabi to the OR at noon to finish up the shunt surgery. Which, of course, is great news, but I can’t be there for her.

Nothing has grown in the cultures still and I am anxious to get up there somehow to talk to them about what exactly the plan is now.

Unbelievalbe. I wouldn’t get through this without everyone’s support. Thank you for all of your uplifting comments and advice.  We need it.

Love,

Teri

Comments { 4 }

Much much confusion and frustration

Because we have moved to the 4th floor, there are all new doctors and NPs.  I feel so alone and abondanded and no one knows Gabi’s full story and they don’t know “her.”  It is very frustrating and just adding to my stress.  I talked to one of the cardiology NPs that i know very well and told her we all need to get on the same page.  She def. agreed and is going to do some “housekeeping” and start coordinating for a care conference.

The results of the CT scan are not back yet. One of the new docs up on4 (which is just a general ICU vs. our 3 floor that is a cardiac ICU) said just because the puss has come back negative so far for any bacteria growth, Gabi’s glucose and protein levels are too high, meaning there may be something going on…infection wise. So, they all agreed to keep her on antibiotics for another 7-10 day course.

We haven’t heard a word from neurosurgery even though we have paged them several times.  I am waiting for them to come down now. They did agree to start back up her feeds, which is good, but that also means they defintely won’t be finishing up the internalyzation of the shunt preocedure today .

The cardiologists have apparently scheduled her cath for Nov. 9th.  Our surgeon is accustomed to having the results from the cath so he doesn’t want to just do an MRI, even though that is where the treatments are headed. 

They all agreed that Gabi won’t be going anywhere for a while.  I can’t even tell you how disappointed I am.  I really don’t think I can take much more of this.  You know that phrase “God doesn’t give you more than you can handle”?  Well….thats a bunch of crap because I can’t handle this.

It is Halloween and I feel like I can’t leave Gabi’s side because when nurses walk in and ask me why her eyes look so blue and her O2 levels are so low, I want to scream!  My other kids need me and so does my husband and we are once again a torn family. Quite a pity party, I know…

Love,

Teri

Comments { 15 }

good puss?

The did a quick analysis of the fluid that came out during surgery, and it appears not to be the bad puss we were worried about. The nurses seem to think that the Neurosurgeon was premature in diagnosing an immune deficiency, since she has been able to fight off infections in the past.

They are putting some “contrast” into Gabi’s belly and PIC line so that when they do a CAT scan tonight they can get a clear look at what is going on. I will post updates as I get them. Right now they are hoping to finish internalizing the shunt tomorrow, but we will know a bit more after the CAT scan.

Teri and I are both pretty rattled right now, but things don’t SEEM as bad as they did at first blush. Hopefully the aborted surgery is just a little bump in the road and not something that is going to change our path home.

Comments { 0 }

update

She is not back from the OR yet, but I just spoke with the surgeon. It didn’t go as well as they hoped.  They put the shunt in her head but when they got to the last step of placing the tube into her peritenium (her belly), he opened up the previous incision and there was a pile of puss that oozed out.  Dr. Lew had to externalize the last part of the shunt and it is coming out of her belly area. I haven’t seen it yet, but I am sure it is not pretty.  This means, they will still have to level her and control the pressures. Which also means I cannot hold her.

He called in a general surgeon and infectious disease to get a sample of the puss and test it for cultures.  The curiuos part is that she has been on gentomycin and vancomycin for 8 days now.  The docs don’t know what kind of infection this may be.  Dr. Lew ordered a CAT scan of her abdomen and we will wait to see what the cultures reveal.

Dr. Lew also mentioned that he is worried her immune system might be suppressed. I don’t know what the treatment would be for that.

We could really use all the spare prayers you have for us.  I don’t think I can take much more of this.

Love,

Teri

Comments { 4 }

Surgery in process

She is still in surgery.  I am anxiously waiting in our new room.

Comments { 1 }

Waiting

We are still waiting for surgery to come and get her.  Should be soon. It is 11:15 now, they said about a half an hour more.  We are getting moved up the 4th floor.  The nurses have more experience with VP shunts and they need a cardiac room for an emergency kiddo.  Room 402. 

Praying all goes well.

Love,

Teri

Comments { 3 }

The next steps

So, I have some light night time reading this evening.  Colleen found 2 articles about intercranial pressure and cerebral blood flow.  I can’t wait to cuddle up and read all about the risks my daughter is about to undergo. Always a party.

There was a cardiologist here that I have met once or twice that did his training and worked in Cincinatti for a while. (Lisa B., you may know him… Dr. Todd Gudausky??…very nice). He has seen a few patients with a VP shunt going into their Glenn. Of course, there is more concern and higher risks, but between all the teams (neurosurgery, cardiology, cardiac intensivist and me) we will be able to see what Gabi needs.  The increased blood flow will cause more pressures and if/when it causes more CSF drainage, then that is OK.  Her body will balance it out.  I also spoke with 2 neurosurgeons and got their opinions and they both also agreed that going into the Glenn will be “fine”.  No worries, right? 

They are planning on proceding with the internalyzation of the shunt tomorrow second case, so around 10:30 am.  The procedure is about an hour and a half and she will be under general anesthesia and intabated. 

The plan from there is do a cath in about 10 days provided the brain surgery goes well tomorrow.  This is standard pre-Glenn orders. A cath is a procedure where they insert a catheter in the groin area and it goes up into the heart to measure pulmonary pressures and fix anything that can be fixed while in there. They can balloon open an artery, plug up any inappropriate blood vessels that have expanded, or insert a stent if needed.  They are not expecting Gabi will need any of these.  These little hearts need to be pumping at certain pressures to be able to be a good candidate for the Glenn surgery. 90% of the patients are good candidates.  They are not anticipating any problems with Gabi.  In fact, 2 of cardiologists are pushing for an MRI instead of doing a cath.  A cath is very invasive and requires sedation and intabation.  Gabi has never had any issues with pressures in her heart or lungs, so they don’t want to put her through another procedure if they don’t find it necessary. The only drawback to an MRI is that if there is something that needs to be fixed, they obviously can’t fix it on the spot. We’ll see what they decide.

After the cath or the MRI, the Glenn will probably be scheduled about 2 weeks after that.  So, late November.  There may be possibilities of going home in between all of these procedures, I am certainly hopeful, but we all know what happens when we try and go home. :)

Gabi is growing so incredibly bored with being here. She can only lay on one side because the EVD is literally stapled to her right side of her head, so I can only imagine how sore her little body is.  I have been able to sit her up in bed for a little bit and play with some toys, but then we had to level her off again: her shoulders have to be level with the EVD. I can’t wait till this surgery is over.

There is a new family next door to us and I peaked at the dry erase board where parents can write their phone numbers or any messages to the nurses and their phone numbers started with 847…there son looks about 12 years old.  I will try and meet them tomorrow.  It’s amazing the people we have met here.

I feel like a broken record when i thank everyone for their support, but I do really mean it…

Love,

Teri

Comments { 5 }

The plan

Gabi is doing great. They are checking her PTT level (basically her anti-coagulant levels in her blood), checking for cultures once again and looking at the results of this morning’s CT scan.  Based on those results, they will decide when to internalyze the VP shunt.  They are still hopeful it will be tomorrow.

After that, the docs are still trying to come to an agreement about when to do the Glenn procedure. Not only do they want her to be as healed as possible from these brain surgeries, but there are also other concerns.  Of course, infection and the anatomy of her heart after the Glenn.  The way they recontruct her heart during the Glenn, a lot more blood flow is brought to the head. Most kids suffer from Glenn headaches for about 2 weeks following the procedure because of the increased blood flows and pressures.  Well, she has a shunt to control the CSF fluid to drain appropriately based on the pressures in her head.  Also, I found out this morning, Gabi is their first patient with a VP shunt going in for the Glenn.  I trust them , but also want to do as much research as I possibly can. (I got my best researcher on the job now!) I guess what I would like to find out  is if increased blood flow to the head will affect CSF production and if the shunt can handle the new pressures.

I am waiting to talk with the cardiologist to see if they know more.

In the meantime, Gabi is strong, stable and looking great. I even got a few smiles this morning after her bath.  She is a fighter and I know she will continue to fight through these next few months.

Love,

Teri

Comments { 5 }

How do you know?

How do we know God is there?

1. Although there was a lot of bleeding in Gabi’s brain, the areas where the blood collected and is now draining were in areas not causing any damage or threatening her life. The blood remained in the fluid spaces and did not absorb into her brain matter. We are so grateful, there is no neurological damage.

2. When Gabi received her first heart sugery, there was a choice of 2 shunts with the decision left up to the amazing surgeon, Dr. Tweddle.  There was either the BT shunt or the Sano.  Big T chose the Sano as Gabi lay in the OR paralyzed and he had to make a decision on the spot. Now, months later, she has bleeding in her brain and they had to turn off the heparin drip and discontinue her aspirin.  She was on those to prevent any clotting near that Sano tube shunt in her heart.  Because Big T chose the Sano tube, her little body can tolerate not being on any anti-coagluants to stop the bleeding in the brain.  If the surgeon had chosen the BT shunt, her life would be threatened and would not be able to tolerate being off those anti-coagulants. How’s that for intervention?!

3. The neurosurgeons had to also discontinue her lovenox injections until all of these brain surgeries are complete. From results of an ultrasound, the docs have determined that the blood clots in her groin area have dissolved enough to allow for a period of time without her lovenox injections.

4. Our friends and family have literally carried us through these past few days.  Thank you especially to Heather and Steve, Colleen and Rich, Shelly, my mom, Chris and Michelle and their mother, Nancy, Meg and Jim for Kristina.  I am sure we are missing others so a general thank you to everyone! God certainly shows us His love through people like you.

5. Because of our strong faith, we were able to forgive those who made mistakes in the past few days.  There was miscommunication among nurses, neurosurgery and the cardiac team. But there was no long term damage and we were able to figure out an ongoing plan where this doesn’t happen again.

Gabi is doing well again.  She is stable.  The tentative plan is to internalyze the VP shunt on Wednesday.  This, of course, is hospital time so we are taking this plan with a great possiblity for change.

What happened?

All day Friday, the EVD (stands for external ventricular drain, which is the external VP shunt) was leaking fluid tinged pink with blood. The fluid is supposed to be clear as water.  The nurse on Friday followed what she thought were correct orders from neurosurgery to allow as much drainage as would come out of the EVD. The EVD can be clamped off to stop the pressures in her brain pushing out the CSF (cerebrospinal fluid).  We all have CSF but we all have slightly different amounts and pressures in our brain. To have a magic number, say gabi should drain 5 cc’s an hour based on her weight and age, is nearly impossible.  “every kid is different”  So, the nurse and neurosuregery was allowing Gabi to drain about 10 cc’s of CSF an hour. We aren’t sure if the nurse didn’t follow the orders or if the orders that neurosurgery had put into their system were unclear.  Doesn’t matter. 10 cc’s turned out to be way too much.  She was overdrained.  When this happens, the fluid around the outside of her brain to cushion it against the skull was all drained out. This caused her brain to press against the bone and break all kinds of fragile blood vessels that they call bridging vessels.  Thus the bleeding.  The blood remained in the fluid spaces and the treatment for this would be to place a VP shunt.  With Gabi, the shunt working too well caused this.  Kind of ironic.

After reviewing a CT scan, blood work and a neurological exam, there is no brain damage. We are so incredibly thankful. The plan now is to drain 3 cc’s of CSf and NO more.  So, whomever is unclamping the EVD has to sit there and wait for 3 cc’s to drain. Sometimes it takes 20 minutes when she is resting, when she is crying it takes about 5 seconds.

The internal shunt monitors the pressures automatically. For example, when she cries or poops causing more pressure in her head to push out CSF, the pressure in her abdomen also increases, so the placement of the shunt and the pressures within her body essentially balances itself out.So, this is the goal to get this back internally.

Wow. I hope that all made sense.  Ethan drove up to Milwaukee yesterday afternoon so that we could have a consultation with neurosuregy to MAKE SURE this doesn’t happen again.  The doc apologized for the miscommunication and we came up with a plan that we all feel comfortable with. I had met with Nancy and the cardiac team earlier in the day so that we all were on the same page.

We feel much better about the situation now.  Gabi is doing well again. She had an uneventful night, so that is all we can ask for.

Thank you all of the support!

Much love,
Teri

Comments { 6 }

Falling down

There was some sort of miscommunication from Neuro, and Gabrielle’s shunt was draining too fast. It was supposed to be at 3cm/hr and it was at 10. This has caused some issues with the capillaries that pad the brain as it floats in the cranium. Since the fluid level dropped too low, the brain moved towards the cranium, and some of those capillaries burst. This caused there to be blood in the area between the brain and skull, which is then visible as it drain out the external shunt.

They did a CAT scan and the bleeding appears to be localized in the in-between space, which is good. They don’t suspect any neurological damage, and I haven’t heard an burr hole talk or anything like that, though I am here in Chicago, not there with Teri, so info should be taken as is.

Teri had to stay with Gabrielle last night because everytime Gabi cries it increase the pressure in her skull, and forces the fluid out too fast. To keep the rate where it needs to be the valve needs to be shut off every time she cries, which means somebody has to be within arms reach at all times.

Right now they are waiting to see how things develop, they have shut down the blood thinners, which were about 10% beyond where they wanted the blood thinned when they tested. The balancing act is keeping the blood thin enough to not have any clots develop in her heart shunt, but not so thin that the brain shunt can’t heal.

Teri sent me a text at 6:30 this morning, and said that the fluid contains less blood as it drains out, which is a good direction to be going. We are pretty frustrated about how Neuro has followed up, and whenever we ask for somebody to come down and answer questions, they send some Jr. level doc. Teri has a call in to Nancy and we are going to schedule a Care Conference with all the docs so we make sure things stay on the same page going forward. Judging that the bleeding has slowed already, the nurses are pretty confident that we are through the heavy part of the woods, but we really don’t want this to happen again.

It was nice that my brother, Connor  was here with me last night as this all kind of came down, but truly painful to not be there with my wife and Gabi.

Comments { 4 }

Holding strong

Gabi is holding her own.  She has been very sleepy today just recovering. The nurses had on hand extra narcotics and opiates to help with her discomfort, but she has been sleeping comfortably for most of the day so they haven’t had to give her anything. She is a tough little girl!

Walking into the ICU early yesterday morning aside Gabi on the stretcher was like walking into a family reunion.  I was welcomed with sad hearts and lots of hugs from the docs, fellows, nurses, respiratory staff, PT, OT… even the cleaning crew gave me a big hug.  We got comfy real fast as Children’s has literally become family and a second home to us. Even the cook at the little cafe in the lobby was sad to see us back.  (I know you all find it surprising that Ethan has become chums with the cook).

The external shunt is working fine but  is very sensitive to pressures and levels.  It has to stay level or below her belly button or it will drain too quickly which would be extremely dangerous.  Without fluid, the brain falls against the skull, causes bleeding and damage.  Neurosugery is keeping close tabs on the amount of fluid drained and the timing and the pressures of the shunt.  We can pick her up, but to jostle her around would be a little risky.  She received a tranfusion today and new fresh blood always makes her comfortable…( No, she is not a vampire) :)

They did an ultrasound of her groin area to see how the clots are dissolving.  One has gotten much smaller, but another is being quite stubborn. The intensivists and the neurosurgeons are working closely together to find the best treatment for the clots.  In the meantime, they are holding her lovenox injections, but she is on a heparin drip and aspirin. We’ll find out more about this at rounds tomorrow.

The docs didn’t want to push her too quickly, so they just gave  her pedialyte through the night.  Her feeds were turned on at 7 am and started very slowly at just 24 ml’s an hour (an ounce is 30 ml, so it is less than an ounce an hour).  She is now up to 29 ml’s an hour and her goal will be 37 ml’s with a denser mixture.

Oh- The big great news is SHE IS OUT OF ISOLATION!!! YEAH!!  No more yellow gowns and gloves.  She got her third consecutive negative MRSA swab and the RSV and Influenza tests came back negative as well.  They will continue to monitor the CSF (cerebrospinal fluid), the fluid that is draining from her brain until it is clear of infection, but infection control has allowed to be out of isolation.  As soon as the CSF is clear, they want to wait a day or 2 and then they sill surgically place a new VP shunt.

The docs are all discussing if this will affect the timing of her Glenn surgery and so far, no one has a firm opinion about it. Nancy is returning from out of town tomorrow and I guarentee she will have an opinion one way or the other.

Thank you all for your continued love and support. I know you are all carrying us through times like these.  We continued to feel so blessed that Gabi is in our lives and so honored that we get to be her parents, but I won’t lie…it isn’t easy.

Our new friends in Milwaukee area have opened their homes to us and brought us food, even though they are still still so raw with pain. And our friends and family that have helped us, we are so very grateful.

much love to you all-

Teri

Comments { 3 }

Recovery

The transport team late last night/early this morning was absolutely amazing. Upon admission, Gabi had blood cultures drawn, a urine sample collected, an IV placed, a sample of her brain fluid drawn, a CT scan, chest x-ray, a shunt series x-ray…I can’t remember what else until  her PIC line was placed.

At 2 o’clock in the afternoon, Gabi got a PIC line in her right leg. She still has 2 large clots in that leg, but they couldn’t get a line into the left leg and inserting anything in her upper body is just too risky with her heart condition. It is risky to have the PIC line near those clots, but they will keep a close eye on it with ultrasounds. She was sedated and did well.

An hour later, the anesthesioligist came in and said the neurosurgeon was ready for Gabi.  They removed her shunt and placed an external one. It actually doesn’t look as horrifying as I imagined.  The surgery went well and she is recovering nicely.  The external shunt will stay in for 5-10 days until a sample of her brain fluid comes back negative with infection. She is on antiobiotics and will be for a couple of weeks.  As soon as the fluid is clean, they will put in a new internal shunt either on the same side or on her right side, depending on how the site looks.

Needless to say, she hs had an extremely busy day and she is exhausted and sore.  Thanks for all the phone callss, emails, texts, comments….everyone’s support  means so much to us.\

We couldn’t get into the Ronald McDonald House, so our great friends, the Buchmann’s offered us a place to stay.  So we have a comfy couch to sit on for an hour until we try and get some sleep. Thank you Chris and Michelle.  You guys are the best!

Love,

Teri

Comments { 8 }

Shunt infection

They have confirmed a shunt infection. Teri and I THOUGHT that this would be a round of antibiotics. Not the case unfortunately.

She will go into surgery today or first things tomorrow to remove the infected shunt, and install an external one. They will use this for 5 days to check the fluid that is draining and troubleshoot in general. Once that is finalized, they will go back into the OR and put in an internal one like she has now.

This is about as much as I was able to get from Teri. We are all pretty tired, and might be able to get a more detailed update up as we learn more.

Comments { 5 }

Overhead bags may shift during turbulance

Gabrielle woke up at 2am puking, and was having a lot of trouble calming down. She felt clammy, and somehow was getting a ton of air in her stomach. We called 911, and they transported her to Mil after an initial exam turned up a fever and some wheezing in her chest.

When they got to Mil they discovered the shunt was backing up, and are doing a series of scans to find if there is a block in it someplace. If there is they need to do a “revision”

Teri is in Mil with her, and I am running around getting the kids off. I will post an update as information comes in.

Comments { 1 }

Burst capillaries

The spotted blood in her spit up was just a burst capillary in her stomach, which apparently happens all the time even with normal people.  But because her blood is so thin being on aspirin and lovenox, she bled just a little more than usual.  So, nothing to worry about.  She continues to gain weight and her sats are holding strong.  I can’t believe we have been home for 13 days.

Our next appt is next Tuesday, the 27th, and hopefully we will get a date for the Glenn.

In the meantime, she is loving being home.  She just loves to hang out with her siblings.  We finally got out in the stroller for her first walk outside!  The sun on her face and the wind blowing were a bit overstimulating, but she’ll get used to it.

We are so blessed and so happy.

I hope everyone is having a great week.

Love,
Teri

Comments { 0 }

Gassy night

Gabrielle is doing great overall, but there a few concerns.  She has been incredibly gassy and pooping a ton. The pediatrican was concerned about dehydration, but because she is on a med called Reglan to help her stomach drain into the intestine faster, a side effect of that is more frequent and looser stools.  She also has incredible gas pains.

This morning she woke up and had a really small spit up on the burp towel next to her and there were dark red spots on it. I assume this to be blood and do know that aspirin can cause bleeding in the stomach lining.  I have a call in to Milwaukee to find see what they think.

She has gained a lot of weight and her sats are looking fantastic. So, mostly good news.

We had Marissa’s 3rd birthday on saturday and she had a wonderful time. We finally have some girl toys in the house and she is in heaven!

Happy Birthday to my dear friend/cousin Jennifer!  35 right Jenn?  You don’t look a day over 20! Love you and wish we could make a Nashville road trip!  Soon, soon….

Love,
Teri

Comments { 0 }

Cold pizza

How fun to hear from old friends that we have known for so long and have been on this journey with us.  Thanks for the anniversary wishes.  Last night was great. I suppose it was  a typical anniversary for a couple with 4 kids under 6 years old and one being sick.  We ordered a pizza…a good pizza from lou’s and Ethan thought he’d save some time and $ and go pick it up.  All the kids (including Gabrielle) went to bed around 8 and Ethan thought he would celebrate (or be a total pig, you be the judge) and order some sushi for himself. he headed off on his journey and poor thing got lost, like he always seems to do.  Long story short, we ate our pizza and sushi at 9 pm and Ethan was extremely frustrated with himself until I teased him that the pizza was cold and we laughed.  i love you Ethan…

Gabi is doing great. She lost another 10 grams yesterday and I was supposed to call in, but I didn’t.  She looks good and I know they are just going to up the calories and/or volume of her food, so I wanted to give her (or me) one more day without lots of spitting up. She of course caught our colds so she has been quite stuffy. Her O2 sats were down to 68, but I gave her a bugarectomy with the bulb  suctioner and they bounced back up to 78.  Phew.

The early intervention coordinator from the birth – three program came over to the house yesterday and Gabi qualifies for all kinds of services: PT, OT, home nursing, respite care, speech, feeding specialist…I can’t remember what else.  They all will be coming to the house, which is so nice.

We have a pediatrican appt today for a general check up.  I don’t know what the heck they are going to tell me that I don’t already know.  We’ll see.

dsc_0023

We are settling into a routine as best we can and loving every second of it. We are so grateful. I look into her eyes and she just focuses so intently on me and smiles. She is our miracle. Amazing that 4 months ago, she was on life support and we didn’t know if we’d get to know her at all. God’s grace.

Love,

Teri

She loves her big brothers and sister

She loves her big brothers and sister

And they love her

And they love her

Marissa was insisting that Gabi prefers Diego over Spongebob...very important info.

Marissa was insisting that Gabi prefers Diego over Spongebob...very important info.

Comments { 6 }

Nine year journey

I can still feel the gravel pressing into my knee as I asked Teri to jump on this crazy train of life with me. There have been many times during the last nine years that we have looked each-other from across the room, and wondered what they heck we are doing. Most of the time I still can’t believe she is even dating me.

When we were planning our wedding we kept thinking that things would calm down after that was over. Then we thought it would calm down once I found a decent job. Then we were waiting for the first kid to be able to walk on two legs so we could go places in public, then the next one to maintain verticality. Lather, rinse, repeat.

I think that this last year has taught Teri and me to stop waiting to be happy. We haven’t stopped struggling for improvement, or lost the desire for more comfort, be it spiritual or creature. I think what we have learned is that striving for more doesn’t mean dismissing what you have now. This last year has seen more tumult that we ever expected, yet I wouldn’t trade it for anything. I have grown closer with my wife, my faith and my family. I am blessed to have been shown what a marriage can really be, and what it feels like to be truly tested in more ways than you have ever expected. This year has been a gift, albeit a bit more dramatic than I would have like, but a gift non-the-less.

I look back at where we have come from waiting tables together at O’Neil’s. Now we have 4 kids, 9 years and more tears and laughter than I can count. I never knew how hard this would be, nor how happy I would be to be doing it with Teri. She has taught me not to let my future wanting deny me the joy of the gift what is by my side right now. It is amazing that an entire summer apart, struggling and crying good night over the phone taught us more about marriage than the previous 8 years we spent in the same physical place. Given enough focus you can put yourself wherever you want to be, and I am blessed to be here with my wife today.

Happy Ninth Anniversary, Teri.

Comments { 8 }

First clinic appt and still at home

I was so afraid, the docs were going to keep her yesterday.  But they let me take her home. Nothing was wrong at all, just my anxiety.  The appointment went great!  She behaved like an angel.  We met with the fellow cardiologist, the cardiology nurse practioner and the attending cardiologist.  They were a few concerns, but overall they though she looked great.

She has lost about 10 grams for the past 3 days…I know 10 grams is nothing. It is only .022 pounds! But for these hypopast kids, gaining weight is essential.  Overall, since she has been home, she has gained 18 grams (.044 pounds).  So, they are OK with that. If she looses any more weight today, I have to call right away.

They scheduled her for her next clinic appt in 2 weeks and at that appt, they are doing a CAT scan of her head, an ultrasound of her blood clots in her vein in her groin area, and we will meet with the neurosurgeon and the cardiology team.  She will also get labs drawn.

Grandma Colleen (Ethan’s mom) came with me and I am so glad she did!  I felt like we were packing up for a week.  She pushed the IV pole while I pushed the stroller.  It was exciting! And we certainly discovered that wearing a hat really pisses Gabi off.

They haven’t scheduled her Glenn yet. Nancy wants to wait as long as possible because of the VP shunt surgery.  She is doing well, so there is no need to rush it. They are thinking early to mid November now. They will schedule it at the next appt.

So far, we have a home nurse coming over twice a week to check her vitals and make sure we don’t have any questions. It is very reassuring. Gabi will also visit her pediatrician this Friday for a general check up.  She cannot receive any vaccinations until after her next surgery but the pediatrican can do the third and final MRSA swab to get her out of isolation when she returns to the hospital for inpatient. No more yellow gowns.yes!

Being at home is just so awesome, but I will be honest, it is exhausting and completely insane.  I just say prayers throughout the day begging for grace and God does bring me grace in ways I never expected.

Thank you G. Colleen for our first of many adventures!

Love,

Teri

Comments { 4 }

my crazy new “normal”

Our peaceful serenity has transformed to insanely busy.  Of course, I am sick with a nasty cold along with some of the kids. We are wearing hospital masks and washing our hands until they are raw and painful.

The kids have taken to Gabrielle unbelievably.  They are so happy to have her home.  The first few days were a peaceful household…everyone on their bestest behavior, helping me at my beck and call.  Now, my helpful 4 and 6 year old boys are back to tackling each other and destroying the living room. Marissa has found an awesome attitude that she has been getting away with for months now.  We’ll get it together, I know we will.

Gabrielle is soooo happy and content. She slept for almost an entire day over the weekend.  She was so peaceful and in a deep sleep that I don’t think she has ever felt before.  At the hospital, there is always someone poking her, checking her temp, blood pressure, or just talking in the background.  I think she finally feels safe.  She just watches her brothers and sister and follows all the activity.

Between daily weight checks, O2 checks, meds and injections, and trying to answer every “mom” call from the other kids, we are pretty busy.  We have an appt in Milwaukee tomorrow at the HLHS clinic. We’ll see what they say.

We are so blessed. Can’t wait for a warm day to take her for a walk.

Love,

Teri

Comments { 6 }

Serene

I am so at peace.  So joyous.  So grateful.  So full of love.

Gen. 15:1 Do not be afraid, I am your shield, your reward shall be very great.

Comments { 5 }

One Family, One Roof

We are beyond excited.

I walked in the front door carrying her free of cords and feeds. Tom’s first question, “Can the new baby walk?”

They have all taken turns helping in their own way, and I really think the kids are almost as excited as Teri and I. There was a moment when we were sitting accross the two couches and the three other kids were standing around all talking at once saying adorable kids things. I leaned back a little and cried a bit.

We are so happy.

Comments { 21 }

TODAY IS THE DAY!!

Of course, I will not believe it until we are walking out with our baby girl.  She has looked fantastic the past 2 days, so we are expecting to take her home this afternoon!! I can’t even begin to explain how excited we are to have our family all together.

We were debating whether 0r not to tell the kids she is coming home.  We hadn’t mentioned it, but little Ethan asked why Dad and I were both going to the hospital. so we told him.  He is ecstatic! He is planning on making her cards and a sign to welcome her home.  So sweet.

Unless something comes up, our next post will be written from home with Gabrielle right next to me.

Thanks for all the love and support!

Love,
Teri

Comments { 19 }

Let’s try this again…

Thursday is/could be the day Gabi gets to see the outside and ride in a car and see her home for the first time!!

She got some blood yesterday because they have to check her lovenox levels every other day right now until she is at a theraputic level.  Becuase each blood draw is a 1/2 ounce or so, her hemadocrit level was down to 35…it should be at 45-50.  So they had to put in an IV and giver her a transfusion.  All went well with the IV…thank goodness.

Neurosurgery is happy with all of the ultrasounds they did of her head and shunt.  They did several of them in the past 2 days while she is different positions (laying flat, upright…etc.). They dont’ need to see her until Nov. 6th.

She is doing great with feeds, gaining weight and no puking! her heart rate has stabilized and hangs now between 105-150.  They continue to say her Glenn will not be until late October. 

Please pray for a good week for us all!

Thank you and much much love to everyone!  Oh and congrats to cousins Carlie and Zach for their new baby girl that arrived earlier this week…God bless Charlotte Rose.

Love,

Teri

Comments { 8 }

Monday Monday

Gabi had an outstanding weekend!  She is having an ultrasound and a chest x-ray this morning. We are hoping and praying praying praying that everything looks good. They have fortified the breastmilk with Similac and so far she is tolerating it well. Big Ethan spent the weekend up there and he said he had never seen her looking so comfortable.  She loves her swing and is talking (arrr arrr arrr) and smiling a ton! We are so blessed.

Will update as soon as I get results.

Love,

Teri

Comments { 4 }

I know they’re going to mess it up

She is doing great, so that means the docs will push her once again.  She is tolerating the breastmilk wonderfully, however, she is not gaining enough weight on it alone.  So, I know that fortifying the breastmilk with formula is coming today.  Not sure what type of formula, but she needs more calories. A typical breastmilk is 20 calories per ounce, and they need her to be at least at 24 calories.  We’ll see how pukey she gets with it. They did a chest x-ray early this morning but the docs haven’t reported any results yet. They always have their x-ray and ultrasound pow wow’s at 9am in the morning. It’s actually kind of funny to see them all huddle up in this little conference room. Anyway, we are hoping there will not be any effusion collecting in the pleural cavity…that would not be good.

Overall, she is doing much better. The dose of captopril has the docs disagreeing once again.  Captopril is an ACE inhibitor that helps the heart relax lowering blood pressure but it also decreases her O2 levels.  Gabi’s blood pressure is on the high end but so are her O2 levels, so they need to find the right dose of this med. We’ll see what they say today.

We are so grateful she is doing better.  When I was talking to one of the NPs (nurse practioners) about going home, she told me that I should call the local fire dept. and local ER to give them a heads up about Gabi’s condition when she is home.  Most likely there will be an emergecny at some point and then they can have us on their radar.  She looks so great that I almost forget how serious her condition is. Crazy. We can barely take care of ourselves muchless 3 healthy kids and 1 heart kid!

Love,

Teri

Comments { 3 }

Looking up

According to Carianne and Sherry, (my favorite nurses, along with MANY others) say that Gabi is feeling better. I wish I could be there today to be able to see for myself. Good news is, she has been on the portagen-progestamil mixture of formula for 6 weeks, so she can now be switched to breastmilk!!

So far, the neurosurgeon thinks that she just needs time to get used to the shunt.  So much fluid had accumulated in her head that when it drained into her abdomen, it messed up her entire system.  That is my interpretation anyway. So we are still hopeful that the problems are option 1 from the previous post.

I have learned to do the lovenox injections and so far still suck at it.  Carianne made me do it and assured me I would thank her for it later, so far, I am still not thanking her.

overall…we think things are looking up.  Her heart rate seems to be coming down to her baseline again, between 120-165, so that is great!

Big Ethan will head up early tomorrow morning. We have first grade family fun night tonight and it would be nice if we could both be there for little Ethan.

Thanks for all the help this week to my neighbors!

Love,
Teri

Comments { 4 }

Which direction next?

I really don’t even know where to start/continue.  For the past 2 days, she is throwing up everything that goes into her stomach, her heart rate is way elevated, her O2 sats are hanging in the lower 70′s, she is extremely uncomfortable and agigated, she has lost about 200 grams of weight in the past 48 hours.  No fevers, no signs of infection at all.  The docs are stumped once again. Everything was going so well after the brain surgery.

There is nothing that the intesivists and cardiology have changed, so they are narrowing down the problems to the VP shunt. I have been waiting for a consult with neurosurgery all day and finally got a hold of the fellow on call on the phone tonight.  There are several things that might be going on:

  1. The ventricles in her brain are trying to find a new baseline of fluid…pretty much just adjusting to the shunt which would get better in about 3-4 days (this is obvsiously what we want)
  2. There might be an infection in the shunt, but given that she was just on a hefty dose of antibiotics and there are no signs of infection, this is probably not likely or
  3. The valve in the shunt needs to be adjusted. It is definitely working but may be overdraining the brain. I can’t even imagine how painful that would be.

The cardiac intevisits are having some disagreements about how to handle her discomfort.  Some want to put her on anti-nausea meds, others do not.  What they have agreed upon is to stop feeding her because she just throws it all up, so she is on pedialyte until tomorrow morning. We’ll see what tomorrow brings.  Right now, she is watching baby einstein and trying to fall asleep. She actually smiled at me several times today in between vomitting, poor little thing…

Love,

Teri

Comments { 6 }

Small graces

I was pretty panicked searching for the call button as I tried to calm Gabi down. I have never seen a soft spot so sunken down before.  Her eyes were sunken and the sockets were a deep blue.  I couldn’t find the call button and told Ethan I would call him back as several nurses walked in with portable monitors in hand. Nancy was quick to follow.  “We’re going down for a CAT scan right now.”  Gabi was wailing and kicking her feet with tremendous strength.  Paula said just hold her while we walk down there.  Even though I was distraught and sweating, tears of joy filled my eyes.  I knew we weren’t going home in the next days, that hope was gone.  My hope now was for her brain function to be OK. I walked down the hall with my baby girl in my arms; the journey so foreign to her and to me.  A simple grace as walking holding your baby.  How many times I paced with my other children trying to calm them down feeling sorry for myself because my back hurt and my feet were sore.  But now, my back is older and sorer and I am so very tired. I took those simple graces for granted, but to look at my baby girl while my feet moved beneath me was God shining down upon us both.  Gabi instantly calmed as we walked together. The look of confusion and pure joy on her face, I will never forget.  I will cherish that moment forever.

Home will come…as Chris and Michelle always say, all in God’s time.

Stupid stupid intercranial discomfort!!

Love,

Teri

Comments { 3 }

Shifting sands

Good news is that Ganrielle’s head is back to normal. Bad news is that all of the inter-cranial discomfort has caused a lot of vomiting, which leads to dehydration which leads to crappy numbers. Her resting heart rate while sleeping is in the 155 range when it should be at 110. Her renal oxygen sat is at 59 when it should be at 80-ish. Suffice to say, tomorrow’s departure has been postponed.

The neurosurgeon is meeting with Teri later today to talk about how to stabilize the shunt, and once we get that done it will be  matter of getting  few good days in a row. Nancy said to go ahead and get all the certification and paperwork taken care of (infant CPR, 12 hours of continuous care, etc.) and she will just tell us on the day, “Get out.”

Teri and I are both a little down, we were REALLY looking forward to a weekend together as a family, but neither of us disagree with keeping her there to get this stuff figured out first.

Comments { 0 }

Silver Lining

I was talking to Teri at the end of the evening last night, and there was one highlight from all the CAT scan drama. When we spoke around dinner-time and she said that Nancy G. came in and immediately called Neuro, and once Neuro got there they got her in for a CAT scan right away. This scared the crap out of me. That kind of rapid hospital action ONLY happens when things are critical. To put things in context, the initial brain surgery had a noon start time, they actually got there for prep at 3. That is the time table we are used to working with, so this sort of rapid action is alarming to say the least.

Since they were in a hurry, and Teri was already holding Gabrielle, they made the most sensible decision, have Teri carry her down to the CAT scan. Teri got to unplug her from all her monitors and feeding tube and carry her through the hospital like a regular baby. Teri said that Gabrielle appeared a little confused, since this had never happened in her lifetime. I could feel the joy in Teri’s voice as she told me this last night, and I feel we came out a little ahead on the day.

Comments { 0 }

Ahhhh-ha?

Car accident:

About 2 blocks from work there is s a stop light, and this morning the wind had blown the temp stop sign down/open (as happens when stop-lights go out) and I see this as I get to the intersection. I slow down to look at cross traffic and try to figure out what is going on. The guy behind me slams into me, and the truck behind him slams into him. Big noise, glass everywhere, and all I can hear are what I imagine are Eastern European swear words.

Mr. BMW (totaled) and I both have State Farm, so that will help with the deductible, and overall headache. The truck in the back I don’t know the details on, but it won’t likely matter to me since we never “met” I was able to drive to work and got away with far and away the least amount of damage. I am fine, might have a little soreness tomorrow, but more an emotional crash than physical, and for that I am very VERY lucky.

Gabrielle:

Rough day. On the drive home I was talking to Teri (HANDS FREE) and Gabi’s head was draining too fast. Her soft spot was depressed and they brought her down to do a CAT scan to check things out. Good news is they were able to get a pretty good view of things, and there is even more confirmation of a lack of brain damage. Right now it looks like it is a matter of getting the VP shunt to drain at the right rate. She is back to laying flat, and Neuro will be in in the AM to talk about what to do next. It seems like the valve/shunt might need some fine tuning, which is another surgery. blargh.

I am happy to hear about the lack of brain damage, and am hopeful that we can get things stabilized in the next few days.

Cable:

Ran a new line and is back on. The cable guy was less then impressed with Uncle Connor’s cable management. What DO they teach them in Seminary school anyway?

Comments { 1 }

Ahhhh!

She has an increased heart rate and funky low temperatures.  So far, the blood cultures are negative and her CBC looks good.  Needless to say, the docs are confused and watching her closely.  Not sure what is going to happen, they are still tentatively planning on a Thursday discharge, but Nancy told me to be prepared to stay longer for another course of antibiotics.  This rollercoaster is REALLY REALLY unbelievably old….

The neighbors dug up our cables by putting in a new fence, so we have no TV, no internet and no phones at the house…and not to mention big Ethan was in a car accident this morning.  He is fine, just frustrated.

I am done complaining.  I think.  Thanks for everyone’s support, love and help through all of this!

Love,

Teri

Comments { 1 }

Get this!!

She is scheduled to come home on Thursday!!!

Gabi is doing so great!  She is like a new baby with incredibly less throwing up, she is happy, she is calm…unbelievable.

They are contributing all of her irritability and random fevers to the hydrocelephus, so they have discontinued all of her antibiotics. They will, of course, monitor her blood levels over the next few days to make sure there is no infection.  Her CBC (complete blood count) continues to indicate there is no infection.  They took her PIC line out this morning because it was starting to appear red and feel warm.  They are not taking any chances.  Unfortunately, this means they have to draw blood in her arm, but I know she can take it!

She continues to get  her lovenox injections twice a day to treat those blood clots from her previous PIC line.  That is the last thing I have to learn how to do..give my daughter injections.  Youch!

Her fontanelle (soft spot)  is a little sunken, not like a dehydration sunken, but because her brain is draining a little too quickly, so she has to stay laying flat as much as possible.

We are so excited, of course a little skeptical and nervous, but just can’t wait! We are so so very blessed with what God has given us.  Gabi is a true blessing to our family.

love,
Teri

Comments { 14 }

Perspective

Carsyn Presley Buchmann
May 22nd, 2009 – September 14th, 2009

Comments { 5 }

Doing well

Gabi is doing great. She is still throwing up a little bit, but she is a baby and she still has half a heart, so we’ll cut her a little slack. Her attitude and demeanor has totally transformed. She is so happy and content now. Poor thing is probably so relieved from all that pressure. She has had no fevers, but the docs want to finish out her course of antibiotics. They will continue until Oct. 1st and then after that, we will see. I know the docs don’t want to say home or even try and predict what is going to happen. SO, we are taking one day at a time at this point.

Dr. hehir and Nancy are going to examine her CAT scan again to look for any possible damage she may have to her brain. They say she might not be the best student, bringing home B’s and C’s with a possible, slight learning disability. I don’t know HOW we could live with that!! :)

Before the VP shunt.  Her head circumference was 45 cm.

Before the VP shunt. Her head circumference was 45 cm.

after the surgery. you can see the 2 incisions on her head

after the surgery. you can see the 2 incisions on her head

This is where the shunt starts and runs down her body into her abdomen

This is where the shunt starts and runs down her body into her abdomen

After the surgery.  Ahhh relief!  hed circumference down to 42 cm.

After the surgery. Ahhh relief! hed circumference down to 42 cm.

Thanks for the visit Lisa, Mrs. G, and Jarod. It was SO great to see you and I so appreciate you making the trip up to Milwaukee. Love you guys.

Love,
Teri

Comments { 6 }

Recovering Well

Gabi is recovering nicely from her VP shunt surgery. Her head circumference has already shrunk from 45 cm’s to 41 cm’s, just in 24 hours! We took some pictures of her giant head…The neurosurgeon said that she probably had at least 2 cups of fluid accumulating in her brain. The nurse said it was described in her chart as a massive hydrocephelus with 3 out of 4 ventricles accumulating fluid. We are hoping this will explain all the random fevers, vomitting, irritability…etc. She has probably had terrible headaches and pressure but her pain from the surgery and her irritability seems to be improving as the day passes. The docs are thrilled with her progress. They have turned her feeds back on at 15 cc’s/ an hour and hopefully her belly will tolerate this. She has been peeing triple her normal amount, which means that the shunt is working and she is peeing off all that brain fluid. Praise God. It is funny how God works sometimes, if we had gone home, we proabalby would have had to rush her back in and it probably would have taken us more time to figure out there is a problem. She stayed here for a reason that only God could have known about.

Thank you all for your kind words and support. We don’t know yet what the next few weeks hold for her…could be the next surgery soon, could be home…we just continue to pray for patience and strength!!
Love,
Teri

Comments { 10 }

Brain surgery a success

Quick update: The neuro surgeon, Dr. Lee, decided that the MRI was not necessary because the signs of fluid were so obvious. Her forehead was gigantic and her eyes were quite low. They took her down to surgery to put in a VP shunt. This tube runs from the top of her brain/head where the ventricle is clogged runs down behind her ear (under her skin) down her neck on top of her ribs and then down to her abdomen. This allows the fluid build up to drain off her brain. This will stay in her entire life, as her body becomes dependent on this shunt. She is doing well pos-op. The narcotics aren’t having much effect on her, so she came back to her room very alert and as Dr. Hehir said, “appropriately pissed off.” I will post more details later.

We had a very late lunch with Chris and Michelle while Gabi was in surgery and it was fantastic to get out with them and laugh together.

Of course, at home all the kids have the stomach flu, so thank you to Grandma Colleen and Grandma Cass and Shelly for helping out at home! WE love you all.
Love,
Teri

Comments { 4 }

Light brain surgery

We just got off the phone with the doctor. The CAT scan showed what they expected, she has enlarged/plugged ventricles in around her brain. This is a common side effect of ECMO since it puts so much stress on the whole system. Since they are blocked, they have not been able to drain correctly, and fluid has built up around her brain. Since she is still an infant she has a built in pop off valve in her soft spot, and this so far has alleviated most of the pressure, and the doctor doesn’t think that there has been any further neurological damage that wouldn’t have been there from ECMO and the rest of the stress of her young life.

She is scheduled for an MRI tomorrow to get a more detailed view of what is going on. We will then meet with some neurologists to talk about what to do next. The normal course of action is to do some “light” brain surgery and install some shunts, which will drain the fluid from around her brain into her abdomen. Once here the body can just absorb it. Side effects of her current condition include irritability, vomiting and more whites showing on the top of the eyes. The eye thing was what the docs saw to trigger further investigation, and the other two had been attributed to normal heart kid stuff. It would be nice if this got rid of/lessened the feeding issues.

We will post more information tomorrow after the MRI, but as it is now she will go into surgery sometime in the next couple of days, and recover from that SHOULD be a couple of days. I for one, would really REALLY like things to go as expected on this one.

Comments { 11 }

Hydrocephalus

WE got a call from Dr. Hehir today at 4:00 with horrible news. The doctors were concerned with Gabi’s eyes, so they ordered an ultrasound of her head. This ultrasound revealed fluid in her brain. They also saw the 2 ventricles that bled as a side effect of the ECMO she was on after her surgery. Dr. Hehir took her down for a CAT scan more than an hour ago to find out the severity. We are, to say the least, anxiously awaiting a phone call from him. He said to be prepared to drive up to Milwaukee tonight…Please pray for my baby girl!
Love,
Teri

Comments { 0 }

Pictures

Gabi is doing fine today. The ongoing plan is that the course of antibiotics will continue until Oct. 1st. Then will do anther culture to make sure the infection is gone ( even though nothing has come up positive). They will take out the PIC line. She is also going to be scheduled for her cath. She needs to have a cath done before her second surgery, the Glenn. The plan is still for her to come home for about 2 weeks after that. The signs of an infection are getting better. No fevers for about 48 hours now, her heart rate is much lower, between 110-160. Blood pressures are evening out too. Right now, we just wait for these antibiotics to finish their course.

Only good thing about an IV in your head...so your mother can put a bow on you!

Only good thing about an IV in your head...so your mother can put a bow on you!

What are you looking at?

What are you looking at?

Our primary nurse, Nicole, had to go have a baby of her own!

Our primary nurse, Nicole, had to go have a baby of her own!

Nothing to say or feel but deep deep sorrow

Nothing to say or feel but deep deep sorrow

At Carsyns burial... waiting to let go of the balloons we all wrote a message/prayer and attached it to the string

At Carsyns burial... waiting to let go of the balloons we all wrote a message/prayer and attached it to the string

We love you Carsyn... you will always be in our hearts.

We love you Carsyn... you will always be in our hearts.

Love,
Teri

Comments { 3 }

what to say… what to say

Carsyn’s service and burial were beautiful. Chris and Michelle and Camryn and Casey held themselves up so admirably. They were strong and loving and sad and in disbelief. They laid Carsyn in an adorable bassinet for her visitation. She looked so peaceful. She was born on May 20th, so by the time we got to the ICU on June 9th, Carsyn had already had her first surgery. I have never seen her without tubes and wires and beeps and alarms. She was always trying to open her eyes, or breathe over that horrid ventilator. But she is at rest now. And I know she was looking down at her loving family and adoring friends wishing she could tell them she is OK. She is holding God’s hand and running in the breeze free from pain. No one should ever have to see a casket the size of an infant. It just isn’t right. There were many nurses and the other staff there supporting Chris and Michelle. Carsyn became like a daughter to many of them. It was difficult for them as well. They let go of balloons after we all wrote a message on the end and Chris and Michelle planted a weeping cherry tree in their backyard to remember Carsyn forever. The pictures and video they had of their beautiful daughter will forever be with us, as Carsyn will always be in our hearts.

Gabi is doing OK. Her new PIC line is swollen and bleeding a lot. They have her leg elevated and hopefully that will help. Last night, she threw up for 2 hours straight and no one knows why. Her vomitting has slowed down so much in the past week that this was a surprise and a mystery. She spiked another fever of 39.0 celcius (102.2 F). They just don’t know what is going on. They stopped her feed drip last night at about midnight and just turned them back on at noon today. Heather, who was Carsyn’s primary nurse, is now with us (yeah!). Nicole, our other primary nurse just went on maternity leave…she is having her baby this Tuesday…good luck Nicole! Ethan is up in Milwaukee today and I just spent over 2 hours putting together this ridiculous marble toy that Thomas got for his birthday and it doesn’t even work!!! Ugh! I should have just stuck with my original idea… a bag of M&M’s. At least I get to spend time with my children.

Love you all!
Teri

Comments { 1 }

New PIC line

Dr. Hagen has decided that she does need a new PIC line. The IV in her head infiltrated very quickly; it only lasted about 20 hours. She still hasn’t had any fevers now for 48 hours, but he and other docs feel that the clot in her leg still may be infected. I am quite frustrated. I am not a big fan of drugs and treatment for a “just in case” kind of scenerio. I hardly even give my other kids tylenol. But they are the experts and certainly know a heck of a lot more than me. So, I will trust them. She goes down to radiology at 2 pm today. She will be slightly sedated for the procedure. She will need 7-10 day treatment with vancomycin. Since they have taken so much blood for the cultures, her crit level is now low, so she will need more blood as well. I suspected that when I watched them take 2 large vials of blood from her yesterday.

Her ECHO looked fine,as fine as a half a heart can look. Her heart still has mild to moderate tricuspid regurgitation, but they are hoping that will improve with growth. Her right side is thick, but squeezing well. There are no clots in her heart, which is great. Her kidneys and liver look good as well.

We have Carsyn’s wake tonight and the funeral is tomorrow morning. Please please pray for strength and courage for Chris and Michelle and their entire family. These next few days/weeks/months…years are going to be so difficult.

Thank you to Grandma Cass, Grandma Colleen and Shelly for all of your help the next few days. And of course, a continued thank you to Ethan’s wonderfully generous Aunt and Uncle…we are so grateful!
love,
Teri

Comments { 5 }

New Day

It has been a rough few days, as you all know.  Thank you all for your kind support.  I feel like I need to pass the support over to my friends, Chris and Michelle, but I pray that they are receiving lots of support from friends and family.  Our new heart family is a tremendous group of peoole: so supportive and understanding. We have Carsyn’s wake and funeral the next few days and although I look forward to seeing my friends, I can’t imagine what they are going through.  When I was pregnant with Gabi, I often wondered if I was going to be planning a first birthday party or a funeral.  No one should ever have to plan a funeral for their child.  There is a reason for all of this. We may never understand God’s plan for each of us, but He does and we just have to trust Him.

Gabi is doing better today. This morning, Dr. Hagen decided not to put in a new PIC line today, but it still may happen tomorrow.  They are watching for fevers and her heart rate closely.  They tried to get a blood culture last night, but were unable to get access to a vein, so they will try again in just a little bit. Dr. Hagen was able to get an IV in…in her head! So, she is getting IV fluids and her antibiotics for now. Last night, her G tube cracked so it was a leaky mess and unusable.  This morning they replaced her tube with a more user friendly MicKey button.  It seems to be less messy and definitely smaller so it hides under her clothes. At this point, I am not really sure what is going to happen. They are treating the clots with 2 injections daily of lovanox (which we are going to have to learn how to adminster if we ever get out of here). They are still watching her to decide if there is an infection and what the treatment will be for that.

We’ll see what the rest of the day brings. 

Much love,

Teri

Comments { 4 }

IV

They have sedated Gabi and are giving her a new IV right now. While they have her sedated, they are going to do an ECHO to see how her heart is functioning.  I spoke with a new doctor today, Dr. Hillary, a hemotologist.   Now I am learning all about blood consistencies and production. I know Ethan knows a lot about this already because he has had a blood clot in his shoulder for about 15 years. 

Dr. Hillary explained that the treatment for the clots will be 2 daily injections of lovanox, a form of heparin. She has been on one injection a day for about a month now to prevent any clots…I guess the preventive didn’t work.  I asked how common this is and of course, it only happens in about 5% of patients.  So, hopefully the clot will do one of 2 things.  One would be that the body will naturally absorb the clot in a few weeks and it won’t be a problem.  Two, could be that the clot is obstructing too much blood flow and then the blood will find another way around to get where it needs to go. (there is a name for that, but I forgot).  Dangers of this are that the clots can become infected, if they aren’t already. The body can start producing too much blood and the consistency gets too thick, whcih would be really bad for Gabi’s heart. 

So, they are starting her once again on vancomycin, which is really really tough on her little veins. She hasn’t had any fevers all day and they really don’t want to have to do another PIC line.  Busy day for Gabi…I am hanging on here.  Ethan is hanging on at home.

Love,Teri

Comments { 8 }

Less than great attitude

I have a less than great attitude today. I feel like I may loose my mind.  I can’t stop crying about Carsyn and then we find out this morning that Gabi has 3 clots in her right leg (upper thigh) where her PIC line was. They did an ultrasound yesterday of her veins and think that it may have been one large clot that has now broken up into 3.  Dr. Hagen is talking to the radiogist now to see how large each is and find out how it is affecting the blood flow. Dr. Musa suspects that the clot 0r clots may be infected which would explain the higher heart rate she has and the fevers.  To treat this would be another PIC line and at least 10 more days of strong antibiotics.  She has been on antibiotics almost her entire life and they are afraid of her tolerance for them in the future. All of her cultures have so far come back negative and her white and red blood cell count are normal. There is no evidence of infection other than a higher rate and low grade fevers.

Dr. Hagen knows something just isn’t right, but he just can’t put his finger on it. Nancy is in London, but they have already talked with her several times about this.  They have agreed on one thing for sure, Gabi will not be coming home tomorrow or anytime in the next week.  They have also mentioned after the 10 days of antibiotics that she may as well receive the Glenn because that will almost bring us to October. This whole thing sucks. It totally sucks. I need a hug from my best friend, I need him to tell him everything is going to be OK…I need my husband and we are yet still separated on this journey.

At least my baby is still here with us.  I can still hold her and talk to  her and see her beautiful eyes staring up at me, so at least there’s that.

I already miss Chris and Michelle here.  The whole unit is a little sad today. Everyone loved having the Buchmann’s here. They brought smiles and hope to everyone around them. I ran into several nurses and Jenni and Jackie from PT and we just didn’t have any words for each other. We just cried and hugged.  Carsyn made a huge impact on this floor.  She will be remembered by many always.

Love,

Teri

Comments { 1 }

September 14th

This truly has been the worst day. Watching Chris and Michelle say good-bye to their precious little girl was indescribably heartwrenching. Their little fighter Carsyn is an amazing little girl and I am so honored that I got the privedge to know her and her parents. She is now free of tubes and wires and IV’s and medications…I just wish there was something I could say to my friends that could provide just a bit of comfort.

Gabi is doing fine.

Love,
Teri

Comments { 6 }

Carsyn Presley

caringbridge.org/visit/babybuchmann/journal

Please pray for these dear friends of ours.

MONDAY, SEPTEMBER 14, 2009 12:07 PM, CDT

We met with the team of doctors this morning, and the news is terrible. Carsyn is going to a much better place with no pain no tubes no wires. She will have the best Grampa in the ever , walking hand in hand with him and Jesus.  We are here as a family we are taking Carsyn out side  to feel the sun and fresh air. She has taught us so much. This does not end the need for prayer we are going to need all your support to get through this time, for we could not get here with out all of your support. we thank you all for that….

Carsyns pain is over ours has just begun.
We give Carsyn to you lord Jesus.
Chris Michelle Camryn Casey And forever in our  hearte, FIGHTER CARSYN

I don’t even know what to say really. We have been walking this same road together for so long, this feels like my own kid. When I go to Milwaukee on the weekends they are my second stop after rounds. If they aren’t there I get the updates from the nurses or doctors. When I am not there for Teri, Chris and Michelle take her out to lunch. Now they are there, letting their dear daughter go back to God, and I am not. It tears my heart out.
Comments { 0 }

Random fevers

Gabi is doing well, except she keeps spiking these random fevers. All of her cultures have come back negative but the docs insist on maintinaing this crazy course of antibiotics. Oh- they took her PIC line out and managed to get a peripheral IV done by the transport team (the ones that fly the helicopter…so cool). She is now on ampicillin, gentacillin, vancomycin and sephapim..I mean really? Last night, after many hours of observation, her IV infilitrated, so the docs had been pumping her full of antibiotics, even though she completed her 10 day course. They did this because they knew that IV was not going to make it through the night. it was taken out at about 9:30 pm. They called down to transport to get another IV but were told that Gabi’s veins were just not strong enough to get another line in. So, they decided to wait until tomorrow, meaning today. At about 11 pm, a fellow came in and I asked what he was doing and he said he was going to put an IV in…what?! I said ” I don’t mean to challenge you, but I don’t think so…” He wasn’t too happy, but I expressed my concerns that she really doesn’t need all these antibiotics…it’s just a fever for goodness sakes! So, he went back to talk to Dr. Hagan and they agreed to give her one oral one, but not to do another IV. So, I will be on a vigil watch today so they don’t poke her.

They are also ordering an ultrasound of her kidneys because her blood pressure is a bit high. Apparently kidneys produce a hormone that affects blood pressure according to the amount of blood flow. So, if her blood vessels carrying blood into her kidneys are constricted, then it could be producing too much of that hormone. She is on a dose of captopril at 5ml, raised from 3 ml in the past week to relax her heart and vessels to lower blood pressure. We’ll see what the results say.

Her demeanor is great, she is tolerating her feeds well. I really hope and pray we are still on track for a Wednesday home coming.

Thanks for all the support. We love you all.
Love,
Teri

Comments { 0 }

Rough Saturday

Gabrielle had a rough day today, but the docs are still planning on a Wednesday discharge date! Gabi spiked another fever yesterday, so they really need to get her PIC line out because it is a source for infection. But she still needs to receive antibiotics intravenously. So, they had to try and put in a peripheral IV in her wrist or foot. 2 docs have tried but were unsuccessful. They are waiting for the transport team to come in and try to get a line in now. They are supposed to be the best at putting in IV’s. Poor thing has been poked so many times today. Her hematocrit level was a little low today They gave her additional blood to boost her red blood cell count up. She may need a transfusion every 2 weeks or so, but we can do that at our weekly clinic visits. She is still throwing up, but only a few times a day. She continues to gain weight, which is great news.

I am very grateful to my Mother for going up to stay with Gabi today while I stayed home and had much needed time with big Ethan and all the kids. We had our block party tonight and our neighborhood is so awesome and supportive that I really didn’t want to miss that. We all had a great day. Poor little Gabi had a rough one, but she’ll be here soon enough! Thanks Mom. I love you.

Our friends need prayers and hope desperately. Little Carsyn is fighting for her life. She has some bleeding in her brain and it appears to be getting worse. Her incredible parents’ hearts are breaking as they watch their little girl suffer. I pray that they find peace and can trust in God that whatever does happen, God is holding them all in the palm of His hands. Their website is caringbridge.org/visit/babybuchmann
Love,
Teri

Comments { 1 }

A blog I follow…

Gabi is doing well. She had a great night and so far a great morning. 2 more days of the antibiotics that are causing her awesome diarrhea and of course extreme diaper rash.

I often get extremely overwhelmed and frightened when I think of Gabrielle’s future. The kids that have survived with her HLHS are just reaching their 20′s and few have reached their 30′s. We truly have so much faith in research and technology. Who knows, in 20 years they could be growing new hearts. But when I get afraid and overcome with tears, I turn to my faith. I have complete trust in God that whatever does happen, we will all be OK. I pray for strength for Ethan and myself and my children that we can be strong and live the best life we were meant to live, whether that be one more year or 50 more. But I still worry. I worry about all the surgeries in front of us. I worry about Gabi getting afraid…I worry about facing her death. I worry about my 3 older children facing their sisters’ death. I worry a lot. Then I read this:

Do you trust God? If you were asked this question, your immediate response would probably be, “Yes, I do trust God.” If you were also asked: Do you ever worry? Your answer would probably be, “Yes, I worry sometimes.” My friend, let me say that if you truly trust God, then you would never worry. If you choose to worry in any situation then know that you are not fully trusting in God.

Trust God or worry. Those are the two choices you have in every situation. Trust God and be at peace. Worry and experience stress. Your choices are that simple and you will make your life as peaceful or stressful as you choose to make it. Trust God and be at peace. This is all that is asked of you. Yet, over and over again, you choose worry over trust, and make your life a living hell.

- James Blanchard Cisneros, You Have Chosen to Remember: A Journey From Perception to Knowledge, Peace of Mind and Joy, p. 128

Now,this does not mean to sit on our butts and do nothing. As my Grandma always said, “God also gave you a brain…use it.” We still have free will and He expects us to make good choices.

I have been following a blog entitled Living With Eden about a man named Paul Cardall. He was born with a significant heart defect and has been waiting for a transplant heart for a year. Well, he finally got his heart and is doing well!! His writing is so honest and full of life. His trust in God is so inspiring. When I was pregnant with Gabi, I often woke up thinking I was living a bad dream. Every time I went to the doctor, I kept thinking he was going to look at her heart and say, It’s a miracle, her heart looks fine. But that never happened. And I couldn’t believe that I was going to possibly face my worst fear. The death of one of my children. And we controlled everything that we possibly could. We chose the best doctors we could find after so many interviews and appointments. But when she was born, I have never been so terrified. I said I trusted in God and everything is in His hands, but I really didn’t know what that was. I now know that we cannot control anything. Our lives are so incredibly vulnerable and God is the only one that can provide comfort. And to face our exhaustion and our fears everyday is only temporary and I repeat to myself “Thy will be done.’”

I don’t mean to say that Gabi is not doing well, because she is. But her heart will never be “fixed.” And I think of Carsyn who has gotten a new heart and is still struggling. And a young boy at age 19 named Logan, who was 3 doors down from Carsyn died a few weeks ago. He received a transplant and begged his mom to let him go after so many complications. To trust in God that whatever happens to my daughter and all of our precious new heart kid friends is all we have. Our culture has trained us to be so afraid of death, I am going to choose not to be afraid and trust.

Paul Cardall’s website is at mytricuspidatresia.blogspot.com/. He is truly an inspiration and has a darling family…

John 6:63
The Spirit gives life: the flesh counts for nothing.

Love,
Teri

Look at my cheeks!  Yes, Docs I am gaining weight just fine.

Look at my cheeks! Yes, Docs I am gaining weight just fine.

Look there's a hand!  Does that belong to me?

Look there's a hand! Does that belong to me?

dsc_00891

Comments { 4 }

Tuesday or wednesday

With the risk of jinxing it, Dr. Hehir said they are looking at a discharge date of next Tuesday or Wednesday!!! We are so excited! Of course, next week we have a ton going on with preschool starting, snack days, homework (that the neighbor boys can’t do!) Thomas’ birthday…and I have to be here, at the hospital, all the time to do all the cares before they will let us go home. Gabi has to have a car seat test where she has to tolerate being in her car seat for 2 hours. Both Ethan and I have to take a CPR class…lots lots lots happening. But praise God, it is all good things!

We are so blessed and so thankful…

Please continue to pray for Carsyn. Her family is so strong and so positive and their faith is so inspiring. Carsyn is strong, I know she will pull through this. But she is tired and needs all the support we can give her. Their website is caringbridge.org/visit/babybuchmann Hang in there Buchmann’s!
Love,
Teri

Comments { 2 }

09-09-09

HAPPY 3 MONTH BIRTHDAY GABRIELLE!

She is doing great! No fevers yesterday, but they want to continue the course of antibiotics for at least 10 days, which will bring us to Saturday. They will culture her again, if it comes back negative they will take that PIC line out and wait another day to make sure everything is OK, then we are out of here!!

She remains at continouss feeds, which means she will be connected to a feeding pump all the time, but I don’t care…she will be home. Ethan and I joked about getting a plastic tarp to put under her because she is still throwing up quite a bit. She has gained weight for about 5 days straight now, so the docs are happy. She is up to 5.17 kilos. Thomas’ 4th birthday is next Friday. I am praying that she will be home so we can celebrate as a family. How awesome would that be!

Please PLEASE pray for no more infections and for her to continue to gain weight. We cannot thank you enough!
love,
Teri

Comments { 3 }

10-14 days

That is what one of the IC docs told Ethan this morning when he asked about going home. The course of antibiotics is 10 days, different from the original 7 day course that they told me. After that, the need to wait 2 days to get the results of a new culture to make sure the infection is gone. Then they can take the PIC line out and then we can take her home! That is, if nothing else happens until then. We are trusting that God will provide this grace for us. I know it is in His time and I feel like the time is almost here.

Thanks for all the love and support.
Love,
Teri

Comments { 3 }

Just when you think…

Just when we think we can’t take anymore, God continues to bless us with a great night and good morning. I have talked to several dear friends this morning and I feel sooo much better. I got to walk Ethan Jr. to school this morning and every time I call the nurse at the hospital, she says Gabi is having a great day. It’s amazing what a little fresh blood can do for her. I think I need a tranfusion sometimes. She continues at her goal feeds…27 cc’s at 24 calories. She has only thrown up twice in 12 hours, so the docs are happy with this progress.

Still no mention of home yet, but the antibiotics will continue until next Wednesday, so we’ll see next week brings. There is a light and the sun shines today!

Love,
Teri

Comments { 2 }

Getting blood but feeling better

Thank you all so much for the support and prayers. I know God has put you in all in our life to carry us through this time. We are feeling better today and so is Gabi.

She is having a good day so far. Dr. Rao ordered a blood transfusion for her today and explained to me that because they have taken so many cultures from the infection the past few days, she hasn’t had time to reproduce enough. Her hematocrit levels are low, so more blood will help her so her little body can worry about other things…like her stomach issues. Which she is doing great with! She is up to 27 cc’s an hour at 22 calories. 27 cc’s and 24 calories is her goal, so she will be there by later today or tomorrow. Then they will give her a few days of this and then try bolus feeds, which is more like 45 cc’s every 3 hours or so and then a continuous drip at night. She is still on the antibiotics, which are pretty strong, but no fevers so far today and it seems like she is feeling a little bit better.

I had a great visitor today! Gabi’s Great Grandpa Danstrom came up this morning and it was so great to see him. He always has wonderfully inspiring stories about his childhood and raising his 5 children. It was nice for him to see where we spend most of our time here…made me feel a little less lonely. God sends his graces in unsuspecting ways. Thanks for the visit GG! We love you very much.

No mention of home today, but I know we have 6 more days of the antibiotics and hopefully by then the feeds will be under control. Her glenn is going to be in October, so even if we get a few weeks…even one week at home, we will be so thrilled. I prayed last night for strength and a good nights sleep for me and Ethan. Even though I am not physically with my husband right now, I know Jesus is uniting us in His own special way. Our special little girl is His gift to us that I wouldn’t trade for anything. And I know His grace shines from above through all of you. So, even though I haven’t responded to each one of you or returned all of your phone calls, please know I hear them and read every message and I can’t tell you how much they all mean to us. I think of all of you all the time!!

Love,
Teri

Comments { 2 }

Infection

Last night was a difficult night.After rounds, I talked to Dr. Rao and we decided to go up on the volume instead of the caloric density of the formula first. So, the nurse increased the feeds to 25 and she was doing OK and sleeping in my lap for about an hour when she started to get a little squirmy and she didn’t look that great…kind of dusky. Her heart rate was climbing to about 175 while she was resting, then it went to 185ish then up to 190′s while she was resting. That is when I reached for the call button. The nurse listened to her and her blood pressure was up to 125/90 with a mean of 95…quite high. Her respiratory rate was increasing to about 90 breaths per minute. The nurse went to get Dr. Rao and left for just a second when her heart rate soared to 210 while she was resting. I pushed the call button again but the alarms were already going off. Another nurse came in and took her rectal temp and it was 103.5. The nurse put some ice on her neck and Dr. Rao ordered a dose of captopril to lower her blood pressure, vancomycin and sephapim (2 antibiotics), some tylenol and to stop her feeds. I put her down on the bed when the lab girls came in to draw blood and by that point, she was quite lethargic. Her heart rate was up to 220 by this point. They got the blood and a urine sample and were on their way. I held her until her fever went down and she was comfortable for a while.

This morning the blood cultures came back positive. She has an infection from her PIC line. The treatment is vancomycin for 7 days. They want to take that PIC line out, but now they need it to treat this infection. SO, they are dependent on the source of the infection! Crazy. Today her heart rate is still elevated, but much better. They are keeping a close eye on her. They increased her feeds today to 25 cc’s an hour and by the end of the day, she will hopefully be at her goal amount of 27. Then they need to increase the calories from 20 to 24 per ounce. Hopefully she will tolerate this.

We are feeling pretty down these days. School has started and it is beautiful outside…we just want our family together. Other families have come and gone and yet we are still here. But I know it could be much worse. Gabrielle is still with us, many families have had to let their children go home to Jesus. So, I am very thankful, but still we pray for strength to persevere.

Please continue to pray for Carsyn and her family..she needs to pee more and is having a cath done today, which can be quite invasive. Her website is caringbridge.org/visit/babybuchmann

Thanks for all the prayers,
Love,
Teri

Comments { 9 }

Holding steady

Gabrielle is having a great day. It seems that if they go REALLY slowly with her, she does a lot better. She is taking 23 cc’s per hour of Portagen-prostamil mixture now and has been doing well all day. At night rounds, Dr. Rao and Laura, the cardiac NP, debated about either increasing the calorie concentration or go up on the volume. They decided to go up on the concentration. So they will increase the calories from 20 per cc to 22 per cc. Hopefully she will tolerate that and actually gain weight by tomorrow. She didn’t loose any today, but stayed the same as yesterday. I think she is at 4.65 kilos. The lipids are still on and she is still on pepcid for reflux and sulcrafrate used for treating ulcers. Her blood pressure was high so they did a chest x-ray to make sure there was no fluid buiild up in her left lung, but the x-ray looked clear (phew!), so they increased her dose of captopril and she remains on digoxin, aspirin and the lovanox injection.

She is smiling a bit more frequently, although the scowling and nasty looks are her more common facial expessions. Poor girl. I keep telling her all about home and her brothers and sister that are anxiously awaiting her arrival…not to mention her Daddy. We’ll get there in God’s timing.

Love,
Teri

Comments { 2 }

Not quite there

Our server has been down all morning….so sorry.
She is up to the full strength formula at 20 cc’s an hour. So far she is tolerating that well. She is still throwing up a bit, but a little bit is considered “normal.” They turned off the lipids (fat deposits that are infused intravenously) for good yesterday and Dr. Rao thought that 20 cc’s was pretty close to her goal amount of food.

BUT- she lost weight again today, so they turned the lipids back on and are deciding whether or not to keep the volume at 20 and up the calories…which is to make the formula more concentrated. OR they can keep the concentration the same and up the volume. I don’t know which way they are going to go yet.

Hopefully we can get this figured out and start gaining weight again. She had a great Sunday and so far a great morning, Nicole said she is comfy and content. Yeah! I was warned by MANY many heart moms that the figuring out the feeding plan is one of the most frustrating aspects of this entire journey and boy were they right…all in God’s timing.

Oh and she has gotten 2 negative MRSA swabs back, next weekend will be her last one and if it is negative she can get out of isolation and actually go for a walk in the hallway! How exciting!

Ethan started first grade today and had a great day. Tomorrow is his first full day, should be exciting…

Much much love to all-
Teri

Comments { 0 }

Plan for the next few days

I am super excited that Dr. Rao is on this week. He really listens to me and pays attention to the patient, not just the numbers. Gabi is on 20 cc’s an hour of half strength formula right now and tolerating that OK, not great, but OK. She has thrown up only 4 times since midnight and is actually sleeping right now. Dr. Rao is Ok with the volume she is on, so they keep her at 20 cc’s per hour and do 3/4 strength formula for 24 hours to see how she does. Tomorrow, they will do 20 cc’s per hour at full strength. Hopefully she will tolerate that and then they will start bolus feeds of about 40 cc’s every 3 hours and then a continuous drip at night at 25 cc’s an hour. That is the goal. Dr. Rao said…”that’s it and then we’ll be done.”

He is also considering ordering another ultrasound of her gallbladder to see if there are any stones that might have formed. He doesn’t think it’s likely, but you just never know. Hopefully this go well and she will tolerate this plan. He said that throwing up 3-4 times a day is considered normal and some crabbiness is, of course, expected…she is a baby.

Thanks for all the support. AM- I am so glad to hear Lincoln is doing well. I can’t wait to meet him!
Love,
Teri

Comments { 3 }

Maybe not

I knew I shouldn’t have gotten so excited. They have turned her feeds off again because she is extremely irritable and throwing up again. They just don’t know what to do for her anymore. Maybe she just needs to get out of her hospital room…she is crabby cuz she just knows there is something more than her one room she has been in her entire life! Oh, except for an OR and radiology. At this point, I don’t know what they are going to say or do.

All in God’s time. We are still trusting in our good Lord and offering all of this up to Him every day.
Much love to everyone as you all get your school year under way.
Love,
Teri

Comments { 2 }

Great night

Yesterday at about 5 pm they switched her to half strength formula. This formula is half Prostagen and half something else, I forgot what they said. She tolerated the diluted formula just fine. At 11 pm, they went with the new formula at full strength and so far she is doing great! I am so elated! She has been on a continuous drip at 22 cc’s an hour. I am sure at rounds they will either increase the amount of the continuous drip or go to bolus feeds, which will be a certain amount every 3 hours. They will probably start with an amount of 45 cc’s every 3 hours or so. The bolus feeds of about 70 cc’s (which equals 4 oz) every 3 hours is her approximate goal. So far so good. If they can figure this out in a few days, her PIC line can come out and she will be ready to come HOME!!!

We have Ethan’s open house for school to meet his teacher for first grade. We have spent the morning getting school supplies packed up and labeled. He is very excited. The kids are all helping me pull out the baby stuff today and scouring the house getting ready for their baby sister to come home. Everyone is beyond excited!

The nurse practioners are teaching me how to use the home care equipment. The scale, the pulse ox machine, the feeding pump…it is pretty crazy. An IV pole and other supplies should be delivered to the house in a few days. In the meantime, I am rearranging furniture to fit everything in and trying to mentally prepare myself to not have the nurses and doctors right there for us. I know she will do fine and they wouldn’t let her go home if they weren’t confident she will be OK, but still we are nervous.

Nancy discussed with me that she wants to wait until October to do the Glen. Her shunt seems to be working well for her, so they want to wait as long as possible to do step 2 of her palliation treatment.

We are so blessed. I can’t wait to show Gabrielle what fresh air feels like and what a car ride is. Her guardian angels are sure to follow us home and watch out for her as they have been all along.

Love,
Teri

Comments { 3 }

No ulcers

We had the upper GI this morning and everything, except for sever reflux, was normal. She is already on prevacid for her reflux and the problem is something more than that. Good news, but still there is no solution. Even Nancy is frustrated at this point. Nicole, my fav nurse, the speech therapist and I asked the dietician if a soy formula existed to replace the Enfaport. The hospital created there own formula for babies such as Gabrielle a few years ago. It is pretty much everything broken down for them, so it super easy for their bodies with comprimised blood flow to digest. Enfamil just came out with this Enfaport in March, so it is a new product that the docs are trying. It does the same thing as the formula that they created. So, the plan is to try Pedialyte for 6 hours to see if her stomach can tolerate ANYTHING. This will determine if there is an anotomical problem or if her stomach is OK. Yesterday, within 3 cc’s of food entering her stomach, she got a bit fussy, within 6 cc’s, she was beside herself and unconsolable for hours, that is when they finally stopped her feeds. So, it a quick trial. She has had 12 cc’s of Pedialyte so far and she is doing great! After the 6 hours, they will try the Portagin (their own formula) and half strength…diluated with water to see how she does. If it is as simple as switching the formula, I will of course be so relieved, but also quite frustrated because we suggested this over a week ago!! Carsyn’s dad, Chris, mentioned it yesterday as well. Every time I brought it up, they looked at me like I was just an uninformed parent. At least they are trying different things. If this doesn’t work, they will most likely do a J tube, but I guess that has a lot of disadvantages. We are really hoping this will bring some answers.

It is so nice to see her awake and happy. For the past week she is either screaming and sweating, or dead asleep getting no food. Poor thing.

Love,
Teri

Comments { 1 }

another upper GI

SHe is not tolerating anything in her stomach. She is extremely uncomfortable when she is fed at all. They think she may have an ulcer, so they have ordered another upper GI for tomorrow morning. In the meantime, they have stopped her feeds and she is much happier.

Love,
Teri

Comments { 3 }

Clarification

I spoke with Dr. Nancy and she gave me some clarification. They need Gabrielle to take in a certain amount of calories…a normal healthy baby needs 480 calories a day in order to grow 30 grams a day. Heart babies need about 650 calories in order to gain that 30 grams a day. Their heart works harder and when they get upset or even suck on a pacifier they burn more calories than a “normal” baby. So, when she throws up constantly she is obviously not getting the calories she needs. She is up to 20 cc’s an hour and so far she is tolerating that. With 30 cc’s in an ounce, that is still only a bit more than 1/2 an ounce an hour. So, as we approach going home, the nurse practioner is teaching me all of these conversions and math 101 in order to keep track of her feedings, and weight gain.
Nancy does not particularily like the J tube. This is the thin tube inserted into the G tube to go into her intestines. Nancy explained that although the formula will go directly to her intestines, the bile backs up and her reflux and vomiting could get worse with the bile coming up, which is more acidic than the formula and the stomach acid, which would cause her more discomfort! And, I guess it is very messy. So far, the G tube is super messy also. Every time I try and pick her up, the connections pop off and stomach contents spill all over. I know eventually this will all make for a great story. but right now, not so funny.
My goal is to keep her calm so that she does not throw up. If she is calm and can keep her feeds down, they will let her go home. Hmmm… no pressure.
Getting very exciting, but she is def. difficult to keep calm. She gets sooo mad. I would too.
Love,
Teri

Comments { 3 }

Confused

This rollercoaster seems to never stop. This morning at rounds, they didn’t think Gabi was responding well to feeds at all. She is only taking 10 cc’s an hour and she just keeps vomitting. They bumped it up to 13 an hour and she was just beside herself. I was hoping that bypassing her esophogus, that will help her stop throwing up, but not the case. I know the suggestion for the J tube is coming. I was really hoping it wouldn’t get to that, but I think it is here. The J tube is a smaller , thinner tube inserted into the G tube that goes right into her intestines and bypasses the stomach all together. This would stay in for a few months and then they can try just using the G tube again too see what happens. She will have the G tube in for a few years. Whatever she needs is fine with us.

Nancy ordered more blood to be transfused into her. I don’t understand why. The nurse didn’t know either. She hasn’t received blood or albumin in a long time. I thought she was kind of passed that critical time. Now, I am confused about how she is doing. I am going back up there tonight or tomorrow early morning, so i will request to speak to Nancy then and get some clarification.

Oh- and they finally put her in a big girl crib! She looks so tiny.

Her big girl crib

Her big girl crib

Bouncy seat in the crib watching Spongebob.

Bouncy seat in the crib watching Spongebob.

No more tubes on my face!

No more tubes on my face!

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Those gauze pads are where the G tube is.  It is all bandaged up for about a week.

Those gauze pads are where the G tube is. It is all bandaged up for about a week.

That is the end of the G tube. There are 3 ports: the big one in the middle is for the formula, then there are 2 side ones, one for meds and the other for the balloon inside her tummy.

That is the end of the G tube. There are 3 ports: the big one in the middle is for the formula, then there are 2 side ones, one for meds and the other for the balloon inside her tummy.

Her big girl crib!  Thanks for the adorable outift Chris and Michelle.

Her big girl crib! Thanks for the adorable outift Chris and Michelle.

To all my HC friends…I got your extremely generous gifts in the mail! I don’t know how to thank you all enough. It has many years since I have seen you all, except for the reunion, but I feel like no time has passed at all. Thank you all so very much!!

Love,
Teri

Comments { 6 }

Recovering well

Gabrielle is recovering nicely from her G tube surgery. She is a little sore from the incision, but other than that, she is doing great. She seems to be more comfortable and less gaggy without the ng tube in. I wouldn’t want a tube in my nose and down my throat either. The nurse practioner gave me a fairly hefty binder containing more information than I could possibly need about the care of the G tube. It sticks out of her tummy about 8 inches and has 3 ports on it: the biggest one for feeding, one smaller one for meds and another small one for the balloon inside her tummy. 2 of the cardiology nurse practioners are coming in today at 1:00 to start going through the even larger home care binder. They warned me it is quite overwhelming, so they will just go over a few pages at a time. But for them to be discussing home is so unbelievable. We have been in the hospital for 76 days now…to even think about all of us together in our house is like a dream. I asked the NP’s….best case scenerios how long till we can get out of here and they best case scenerio would be about 2-3 weeks still. I will take it!

They have her on a continuous drip feeding through the new G tube at 5 cc’s an hour, about a teaspoon full. At rounds , they bumped her up to 10 cc’s an hour. So far, her stomach is tolerating this. She spit up twice yesterday, but she is a baby and that is what babies do. SHe is on prevacid for reflux…we’ll see how she does with more in her tummy.

If she starts to vomit again, there are small things they can try, like venting out the air in her tummy through one of the ports or switching formula, but I think they will eventually have to insert a J tube inside the G tube that bypasses the stomach all together and her food and meds will do directly into her intestines. That will be the last resort. WE can still try and bottle feed her as often as we can. They don’t want her to loose the oral satisfaction of eating. God knows her family loves to eat, we wouldn’t want her to feel left out.

Overall, she is going great and completely tubeless on her face. When I get home tonight, I will post some pictures. Thank you for all of your prayers!
Love,
Teri

Comments { 5 }

G tube update

G tube went well. Gabi is breathing well and took meds while sleeping and didn’t even flinch.

Plug and play bayby at this point.

Oh man, almost ready to start thinking about being home.

Comments { 3 }

G tube

The upper GI results were normal. They are getting started on the G tube surgery right now. It is almost 3 o’clock. It is about an hour procedure. They will give her a general anesthetic and have to intubate her for the procedure, but they can hopefully extubate before they leave the OR. Thanks for all the love and support. We are so blessed.
Love,
Teri

Comments { 2 }

Upper GI and G tube

They are going to do an upper GI today at 1:30 and then as my friend AnneMarie has suggested all along, they will place a G tube tomorrow. This is a surgical procedure with a few day recover time. I don’t have the specifics of the surgery but will find out later today. I am totally OK with this as placing this will GET US HOME!!! Nancy actually said in rounds, this will get us out of here for a month or 2! How exciting is that!

Comments { 4 }

Doing great

We got the ultrasound results and everything looks fine. Her gallbladder is small, which is good. The liver specialist seemed to think there may have been a clot at some point near her liver, but he cannot see anything anymore. There is no interference with blood flow in the liver, so the elevated enzyme levels could be due to just a consequence of heart surgery. Her liver has taken a bit of a hit and it could be due to all of the meds she is on and/or because her cardiac function is not “normal”. There is no permamnt damage…the docs described it as similar to an adult having a big night out of drinking, not that I know anything about that.

She spiked another fever last night of over 101, so she is now on another 7 day dose of vancomycin and cefepine. This also starts us over with the MRSA testing. They are trying to get Gabi out of isolation but she has to get 3 negative nasal swabs in a row, one per week. She has had 2 so far but if they have to start antibiotics, then we have to start over. So, after the 7 days of antibiotics, this will unfortunately start us over.

She is vomitting a little less although today she had quite a few episodes of puking. She is up to 18 cc’s/hour on continuous feeds through her ng tube. Speech came in to TRY giving her oral feeds (bottle in the mouth) and she was a total spaz. Jacki, our PT, was holding her while Jen (speech) tried to feed her. The scowl on Gabi’s face had everyone cracking up. Jen said that she did really well. She defintly does not have a direct aversion to the bottle, she just doesn’t quite know what to do with it. Some kids will push the bottle away and get extremely upset, but Gabi sat there scowling at Jen with the bottle in her mouth and it was if she was questioning…”what the #### do you want me to do with this?” She took a few sucks and then didn’t know how to swallow and gagged on the few drops. She tried several times but Gabi was as stubborn as the rest of our children. Tomorrow is another day. To AM- they have not talked about a Gtube yet. I think they want to try and bottle feed for a few more days/weeks at least to see where she is at.

Quick story about Jacki, one of our physical therapists. The first time Ethan and I met her was when we were lost in the hospital on the day of Gabi’s first surgery. We ran into jacki and ashe looked like she knew where she was going so we asked how to get back up to W3. She directed us and somehow we got into a conversation about what we had for lunch. On that particular day, we chose one of the cafes in the hospital and had a sandwich that was quite gross. Ethan explained to jacki what he thought the cafe could do to improve the sandwich. Usually when Ethan starts talking about food, he goes on and on about the spices and flavor combinations and I just quietly stand by until he finishes his thought and nod my head (I love you Ethan!). But this time, he captured an audience, Jacki was concerned about our disgusting sandwich and took note of what sandwich it was and where we had purchased it. About a week goes by and I see her come into Gabi’s room one day and we just laughed! I had no idea she was a physical therapist muchless for the cardiac ICU. So, we have become friends. Carsyn’s parents and I a few weeks back planned a lunch outing and Jacki suggested we go to this place called The Pie House. She swore it was really good and told Chris and Michelle where it was…47th and something…in Milwaukee. So, we drive the 10 minute drive and I notice that we are in not such a great neighborhood, but Chris and Michelle kept checking the street signs and still trusted jacki that her directions were correct. There were boarded up buildings and punk kids hanging on the corner. We drove up and down the few blocks several times and finally laughed and chose another resteraunt. When we get back to the hospital, we told Jacki that we just couldn’t find the place. She looked confused and went to go look it up. She came back laughing and said it was called The Birdie Cafe and it was totally on a different intersection across town. We’ll never let her forget it. She is one of the many care providers here that make us laugh, sometimes, on the hardest of days and for that, I am forever grateful.

My dear friend Nettie came up for a visit today and it was soooo great to see her! Thanks for coming up, your friendship and support mean so much to me and Ethan. Your perspective on life and positive attitude is always so inspiring. And of course, we are praying for your family.

Babysitter is working out wonderfully so far. Thank you to everyone involved who helped us to arrange for her to come over for the next few months!! We love you all.

Love,
Teri

Comments { 1 }

Ultrasound

Gabi is doing OK. She continues to throw up most of the formula she is given through her ng tube. They have been trying continuous feeds since yesterday instead of the 15 cc’s every 3 hours. Right now, she is getting 8 cc’s an hour continuously. Ethan was there all day yesterday and seemed to think the puking was getting a little better. The nurse seemed to think that because she gets so worked up and angry, that then she throws up. So, we continue to try and figure out if this is “normal baby stuff”, a heart issue, a GI issue related to the heart issue or consequences related to the surgery. Hopefully, it will just get better and we won’t need to know.

The docs ordered an ultrasound for today to look closely at her liver and gallbladder. Her ezyme levels were elevated and apparently because she was on TPN for an extended period of time, there might be damage to her liver. From what we can research online ( I know, I know I shouldn’t look online) it doesn’t seem like it would be permanent damage. I haven’t spoken with a doctor yet, but will when they get the results.

We have a new babysitter coming over tomorrow, so I will head up to Milwaukee as soon as the kids get acquainted with her. In the meantime, we are school supply shopping and cleaning out our house. It’s amazing how fast stuff accumulates, isn’t it?

Our dear friends are off to Ethiopia to pick up their 6th child. He and his new Dad will be home in the next week or so and they will have their family all together. Another friend is waiting for their daughter from China and draining all their financial resources to get her home. I have always taken the fact that my family was all together for granted. Never again. God teaches us in ways we would never expect.

Love,
Teri

Comments { 3 }

More puking

Overall Gabi is doing well. She is not tolerating feeds very well so far. They tried a bottle yesterday and she totally freaked out. When they feed through through her ng tube, she throws most of it up and is extremely uncomfortable. She has been very irritable and upset the past week and we just don’t know if it is from normal baby stuff or something more. The docs aren’t that concerned, which is frustrating. They aren’t trying to console her for hours on end while she is crying. She is getting 15 cc’s through her ng tube over an hour, every 3 hours. We are guessing that her tummy is upset because it has been empty for over 3 weeks except for all her meds. That would upset my tummy. It may just take time. I am so excited to be at this point, but I don’t like it when she is uncomfortable especially when we don’t know why. Ethan will be at rounds today, and he is much better about voicing his concerns logically. So, we’ll see what they will say. We continue to pray for patience and guidance.

Love,
Teri

Comments { 4 }

Doing great

Gabi is having another great day! She is quite crabby which we are considering many different reasons: reflux, anger, boredom, possibly still withdrawal…could be a number of things. She is spitting up this foamy saliva and it appears as though she is in pain, so I am thinking it is reflux, even though Nancy insists that because she is not eating through her mouth yet it can’t be reflux. Sometimes a mom just knows better. I insisted they try some zantac, so they are mixing it into her TPN fluids today. We’ll see if that helps. The docs are so incredibly intelligent, but they look at the charts, they don’t sit by her bedside. Frustrating at times.

There are many heart friends on the unit that we have become family with. Carsyn, Jack, Lillyann, Benjamin (who just got to go home!!), Elizabeth, Trish among many others that are either very sick. Watching Gabrielle and all of these amazingly strong kids fight for their lives certainly keeps things in perspective. God has shown me what is truly important in this short life of ours.
I am feeling MUCH more positive today. Gabi’s x-rays are all looking great and the docs are staying positive about her recovery. Besides her fussiness, she is looking fantastic. They are going to try and start feeds with an actual bottle tomorrow. So exciting!

Love,
Teri

Comments { 5 }

Another good day so far

The chest x-ray from this morning had a “sliver” of fluid in her left pleural chest cavity, but nothing to be too concerned about. They continue to watch it closely with 2 x-rays a day. We’ll see what tonight’s results bring. They are going to introduce feeds on Friday, by mouth and through the ng tube. I cannot believe I may actually get to sit and feed my baby girl. They weighed her this morning and she is now 4.225 kilos or 9 lbs 3 oz. I guess the TPN and lipids have served her well so far. She looks so huge to me and to think that Marissa was 9 lbs 1 oz when she was born! Ha!

She has had no fever since yesterday but she still has thrown up several times today. She is just throwing up this foamy saliva secretiony stuff that I actually thought was from reflux but Dr. Rao thinks it is from a virus that she is working through. She seems to be a little bit more comfortable today.

I am REALLY trying to get happy and stay positive about the chest tube being removed and starting feeds, but I can’t help but feel like another punch in the gut is coming. I am just nervous that the leaky lymphodes are not healed up and the feeds will cause more drainage, which then they would have to replace the chest tube. I don’t mean to be a negative nelly, but sometimes this rollercoaster gets to us all.

But-in summary, Gabrielle is doing awesome and I feel so blessed!
Love,
Teri

Comments { 0 }

So far so good

Gabi still doesn’t have a chest tube! I can actually walk around with her while pushing the IV cart. It is so so great.
She had another chest x-ray this morning and Dr. Rao said it looked great. There was no fluid and were no air pockets. Her sats all look good and they are talking about starting up her feeds again on Thursday. Those will be critical days as they watch her chest cavity very closely for any fluid build up.
I told the docs I was so surprised that they removed the chest tube and I asked Dr. Rao what was the reasoning behind it and he answered that they just didn’t know what else to do, so “they took a gamble.’ Hmmm…kind of risky, but I like it. He explained that the chest tube had been in for so long that it was a source for infection so if they had to replace, then they would, but so far so good!!
The prayers are working…God is certainly listening.

Please pray for a dear friend of ours and her mother as cancer was just diagnosed in their family. I can’t imagine the fear and uncertainty that the whole family is feeling. May they find trust in God and peace knowing that He will carry them through this difficult time.

Have a great day.
Love,
Teri

Comments { 5 }

x-ray results

They just looked at the x-ray and the results are great! There is no fluid build up and no air pockets thus far so they will not put in a new chest tube as of right now. They will do another x-ray first thing in the morning. Things could still change, but we are very hopeful! Her O2 sats and respiratory rate are holding steady, so that is a great sign. I just can’t believe it!!!

Comments { 6 }

unexpected..confusing..but GREAT news

So, when I called later this morning, Nicole, our fab nurse, told me she had great news. I got a bit nervous. THEY TOOK OUT THE CHEST TUBE!!  What?!?!  I am very confused. Early this morning, we were presently surprised that she only had 20 cc’s of drainage yesterday.  I NEVER would have expected them to remove the chest tube. They are doing a chest x-ray at 6 pm to see whats going on in there before they start feeding her. I have not talked to the docs yet to find out exactly what is going on, but we are just thrilled with this news.

My first reaction was that the PA’s took out the chest tube to be able to perform a procedure called pleurodesis, which is what they have told us about all along. But Nicole said that is not on the table as of now. I am headed up there as soon as I can get out of here to talk to the docs face to face.  I am so excited to see her and hold her without that stinkin’ chest tube!

I prayed last night asking God very specifically for less drainage so that we can progress forward.  I think He answered without question!  I just hope she continues to not drain because now the fluid has no where to go but accumulate in her chest cavity. I am trusting the docs that they know what they are doing.

I will update as soon as I speak to the docs.

Thanks for all of your continued support and prayers. Good luck with training Belinda!  Belinda is an old friend of mine from high school and we found each other on facebook. She is running in the Chicago Marathon in Gabrielle’s honor. Visit her website at  www.heroesforlife.org/goto/bsteckenrider and consider making a donation.

Love to all,

Teri

Comments { 1 }

No mistake…

First…Happy 2 month birthday to my baby girl!

The 90 cc’s measured the other day was not a mistake. She measured out 72 yesterday and still has fevers running up to 103. She seemed to be feeling a bit better this afternoon. She sat in my lap content for a long while. The past few days she has just been really uncomfortable and mad…I guess I would be too. the cultures they have taken so far come back negative, so it may be just a virus that needs to run its course.

Nancy, Dr. Tweddle and a few other docs will be discussing tomorrow morning what they want to do about her chest drainage. She really has had more than a week now of no progress. Dr. Rao said they would be presenting us our options after that meeting.

There was another 2 kids on our floor that passed away over the weekend. I had met both families at the Ronald McDonald House and I can’t imagine the pain they must feel. The only comfort is knowing that their precious children are not in any pain anymore and are at peace with God.  It really hits home and humbles us quite a bit. There are other really sick kids surrounding us as well that I continue to keep in my prayers. Hug your children a little tighter tonight before they go to bed.

Stay cool and many blessings to everyone-

Teri

Comments { 5 }

Back up to 90

Her chest output was back up to 90 cc’s yesterday. BUT the container that the nurses measure the fluid in spilled, so we are thinking it might have been a mistake. Either way, it is not zero and there is no way to know for sure, so we will just continue to wait.

Her new PIC line went in just fine and she is comfortable for right now. She continues to have fever spikes but so far nothing is growing in her cultures. She had 2 uncles and her Grandma come visit her today. I am glad she was awake for all of the action in her room.

That’s it for now…we continue to wait. Thanks for the continued support and prayers. Have a great weekend.

Love,

Teri

Comments { 2 }

Fever spike and new PIC line

Good news is that on Wednesday her total output from her chest tube was only 30 and yesterday (thursday) was only 20!  We are getting there. Maybe a few more days until we get nothing from that tube. Then they will wait a few days at zero and then try and feed her again. Hopefully the leaky lymphodes have healed up and then there will be no more drainage and she will be able to work on feedings.

For the past 2 days, she has had several fever spikes of up to 103. They took a urine culture and several blood cultures. The results will be available in about 48 hours. In the meantime, they have started her on vancomycin to fight off the possible infection. They are also going to start another PIC line in her groin area. The NICU PIC line she has had since the surgery has been in too long now and is a source for infection. I think they were hoping she would be better by now and wouldn’t need a new line, but alas she is still there and still needs meds introvenously. They are taking her down to radiology to get the line in now.

Please continue the prayers for Gabrielle and our family. We are all holding up OK but as the summer comes to a close and we are getting school supply lists ready, we just want our family to be together and under one roof.

Love,
Teri

Comments { 7 }

Sixty

Yesterday they measured 60 cc’s out of the chest tubes. Down from 80, but still a ways to go. The docs said this is taking an “unusually long time.” We’ll get there. In  the meantime, we wait some more.

We gave her a bath today and got her dressed in some cute pink clothes. She is at my favorite baby age…so focused on voices and faces and wants to talk. I can’t believe she will be 2 months old this weekend.

I found this poem on another blog and just loved it.

1/2 OF AN ANGEL’S HEART

It’s a beautiful day up in heaven. Jesus is rounding up his tiniest angels, to go live on earth, and be born. One of the sweetest angels says to Jesus “I don’t want to leave, I like it here, and I will miss you.” He reassures the scared little angel that everything will be okay, and that the angel is just going for a visit. The little angel is still not swayed on this idea. So Jesus kneels down, and says, “How about if you leave half of your heart here with me and take the other half with you, will that be okay?” The angel smiles and says, “I guess that will work.” But the little angel is still a little scared. He asks, “Will I be okay with only half of my heart?” Jesus replies, “Of course you will, I have other angels there that will help you out, and you will be fine.” Then Jesus gives the angel more details about His plan. He says, “When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart.” “Enjoy your time with your family, play and laugh everyday.” “And when its time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves.”

With much love and many blessings,
Teri

Comments { 1 }

Wrong direction

Eighty.

80 was the total yesterday. We are going in the wrong direction. The doc is putting in a CVP line right now.  This is to measure central venous pressure. It is a more accurate reading of blood pressure and they want to see if her pressures are too high that could be contributing to this drainage. Frustrating, but what are gonna do?  We continue to pray and wait.

Love,

Teri

Comments { 4 }

Forty four

I thought we were getting somewhere when she only had a total of 44 cc’s yesterday, but today she already has 30 that drained out since 6 am and it is noon right now. The docs didn’t change anything, they really want that drainage to be as close to zero as possible. So, we wait some more.

look at me...just one tube on my face!

look at me...just one tube on my face!

Jenni, Gabrielle's physical therapist working those muscles.

Jenni, Gabrielle's physical therapist working those muscles.

Who can yell the loudest for all of Milwaukee to hear?

Who can yell the loudest for all of Milwaukee to hear?

Love, Teri

Comments { 0 }

Weekend Update

Not much new with us. Gabi’s output from her chest tubes remain about the same. Friday was at 67 cc’s and Saturday was at 70. We’ll see what happens today. Just more waiting. Other than that, she looks great. Her O2 sats are good at about 85. She is still room air without any oxygen support. She is off the valium and almost off of her methadone, but she is still comfortable. The thing that makes angers her the most is diaper changes.

Lots of action on the CICU this weekend. Another little baby was put on ECMO and a little kiddo next door to us almost didn’t make it, but Nancy and the whole crew with a lot of running and teamwork were able to save his life.I don’t know any details.

Carsyn needs to pee. Her kidneys are not kicking in like they are supposed to. Please keep them in your prayers.

Thanks and lots of love-

Teri

Comments { 4 }

55 and counting

55. Total of 55 cc’s out of her chest tube yesterday. Better than 80, but still a little bit to go. Nicole, our nurse today, is giving Gabi a bath and she called me to ask if we had any clothes at the hospital for her!  So cute. We can cut holes in the jammies for the chest tubes and her IV in her foot or use ones with plenty of snaps. She is getting there. Slowly, slowly slowly.

Carsyn is doing well too. You can see her progress at caringbridge.org and visit website babybuchmann. We are starting to see other Norwood babies pass Gabrielle in their progress and some are planning their trips home already. So happy for them but really stings knowing that we will most certainly celebrate Gabrielle’s 2 month birthday in the hospital. That green monster can get at the best of us. On the other hand, some families had to say good-bye before their children ever got to come home at all. It’s all perspective and appreciating our children while we are together.

Love,
Teri

Comments { 1 }

I am going to kink those tubes.

Total drainage yesterday was 80 cc’s. So far today, she is at 30…about the same as yesterday. yawn. Nothing is happening. At least she is stable and I am able to hold her!

I just got home and am cleaning out my fridge and emptying the dishwasher. I realize that we have not returned any tupperware from all the incredibly generous dinners we received…not to mention thank you cards. I will get to the thank you cards, but really, if you need your tupperware back, please feel free to come on over and go through my cabinets. We keep them in the middle drawer under the microwave.

Love to all-
Teri

Comments { 1 }

Wednesday update

Gabrielle was wide awake this morning. While she was getting her physical therapy, I asked the PT and now my friend jenni, if babies actually smile for the first time in the hospital. Surprisingly, she said yes. One of the nurses said she got Gabi to smile and I was so happy to hear that.  I was  so happy to hear that she could find some happiness in her life right now. I haven’t seen a smile yet, but she certainly was content this morning. Besides, Ethan Jr. didn’t smile until he was almost 8 weeks…he is a bit intense.

Her total output from her chest tube was 90 yesterday. I picked her up quite a bit yesterday…and yes, I can actually get her in and out of bed by myself  now!  But moving her around more than usual causes the fluid to dump. The docs didn’t change much today. Weaning her down on the valium and methodone still, but other than that it is just a holding pattern waiting for that drainage to stop.

Carsyn is doing great!  I still can’t believe they went from several months of just a holding pattern and now they are already talking about closing her chest possibly today or tomorrow. So amazing! They said her recovery should be about 6-8 weeks. So, we are planning on going home on the same day. I hope Dr. Nancy is OK with that. I see Nancy smile from across the unit and I swear she is thrilled that little Carsyn and Gabrielle are seperated. Or maybe it’s because the parents cause trouble :) and she is happy to have us seperated.

Comments { 2 }

Echo results

The docs did an Echo on Gabi’s heart yesterday and they went through the results with me today. Her heart looks the same. Not awesome, but not terrible. She has some leakage in her tricuspid valve. This is the valve that is between her combined atriums and her right ventricle. The blood pumps from her atrium through to the ventricle and then out to the body. When there is leakage, the blood tends to go backwards back up into the atrium, kind of like backwash. This makes the heart work very hard and get very tired. The right side of the heart is not meant to be the pumping chamber, so it is working hard anyway and then the leakage on top of her reconstruction makes it that much more difficult. They have seen this leakage get better, stay the same and get worse. They just need to watch it very closely.

The cardiologist also explained to me all the meds she is on and what exactly they do. Captopril helps the heart relax enough allowing it to fill with blood, digoxin helps strengthen the muscle. Lovanox is like heperin which is a blood thinner to avoid any clotting. She is still on diazapin and methodone, although they are weaning these off slowly.

Her output is at 80 cc’s for total yesterday and today so far is at 40 starting at 6 am and it is 3:30 pm, so it is halfway through the day and she is about the same as yesterday. We are waiting patiently.

When I got here, I was running into the entrance, passed by room 308 where a little girl named Praise has been cared for since we have been here and there was another child there. Praise went home to Jesus this past week and to see her room occupied by another heart patient made me very sad. I continue to pray for her family. I quickly checked on Gabi, gave her a quick kiss, and ran down to Carsyn’s new room. She is on the transplant side of the unit, so she is now down the hall from us. I got to hug her mom and see little Carsyn through the window. She is doing awesome. Her O2 was at 100%!!!  She is doing great!  Chris and Michelle were about at their breaking point and God showed his mercy and grace to that family.

Thanks for all of the continued prayers and support everyone.

Love,

Teri

Comments { 1 }

Carsyn news

Gabi is doing just fine. Nothing new.

Carsyn, Gabi’s neighbor and friend…. GOT A HEART!  I am so excited for them.  At 3:55 am, Carsyn’s heart was on it’s way to Childrens.  She is still in the OR at 7:55 am right now with about 2 hours to go, but so far so good.  Please say a prayer for them today. She will have a long fight of recovery ahead.  You can follow their progress at caringbridge.org and then search for their website at babybuchmann and then go to the journal link. I am just beside myself right now.

Love,
Teri

Comments { 4 }

Monday update

Gabrielle had a good weekend. The biggest news is that she is completely off any oxygen…she is on room air!

They continue to wean her methadone and diazipan (valium) down each day. But she remains comfortable. The drainage from her chest tubes gets better every day, but is still above 150 cc’s each day. So, we continue to wait for the drainage to stop. They are going to do an Echo today to make sure her cardiac output is sufficient. This may be contributing to the large amount of drainage. They want to exhaust every other possibilty before they do the pleuralodesis procedure.

We got to hold her this weekend a whole lot. She certainly does not like transitioning back to her bed, but she enjoys being held very much. She is so weak and sore that I think it hurts her to be moved so much. It’s so wonderful to be able to hold her!

We went to baby John and Charlie’s baptism yesterday at the Dominguez’s. It was great to see our friends and welcome their children into the Catholic church. We love you guys!

We got home last night and realized it was already Monday the next morning and another week of traveling is in front of us.  We are on day 49 of being in the hospital. We are exhausted, but we will keep going. We are trusting in God and putting one foot in front of the other. I know He and all of the prayers out there are carrying us through this.

Please continue to add Carsyn to your prayer list. She is on day 48 for waiting for her heart. There has been a lot of pain on the unit these past few days. A few families had to give their children back to Jesus and many more surgeries and little kiddos are being admitted.We are so blessed that Gabi is improving, even  though she is deciding to putz right along.

A few pics from the weekend.

Love,

Teri

Comments { 10 }

I jinxed it

Every time I get a glimpse of something hopeful, I get punched in the gut. They took her out of the crib and put her back in the high ECMO bed…just in case. Dr. Nancy didn’t think she was stable enough to be in a regular crib. Putting her in that crib was a sign of hope, it was a sign that she was doing well…I know she is doing OK, but I am so disappointed.

They put in her peripheral IV today. She needed a blood tranfusion. Her output is still in the 200′s.

Tough week…but tomorrow is another day.

Love,

Teri

Comments { 4 }

Nothing new

Except a new crib!!  The nurse asked the docs if Gabi could get a new crib and they approved. She looks like a tiny little peanut in her new crib.  I forgot my camera during the week, so I will take some pics tonight.

Nothing is new really, we are just waiting for that drainage out of her chest tube to subside. The past 2 days have still been above 200 cc’s.  They are weaning her methodone (treatment for withdrawal) and diazapan (valium) down every day, so she will be less and less sleepy.

Love,

Teri

Comments { 3 }

left pleural cavity

So, Gabrielle is doing OK. I have had 3 docs explain to me what is happening with this chest tube drainage from her left plueral space. Still, I could not understand it. Finally, a PA described it to me and I think I understand now.

So, the lymphodes near her left lung were damaged. A few weeks ago, when they tried to feed her breastmilk through her ng tube, lots of this milky substance leaked out into her drainage tubes, called chylous. They explained to me that the fat that we eat goes through the lymphatic system and because those particular lymphodes near her left lung were damaged, they leak out the fat. So, they have now tried the special formula where the fat is already broken down for her. Her stomach is tolerating it just fine, but her lymphodes are leaking tremendously into that left pleural cavity and then draining out the tubes. It is not the chylous stuff, it is just regular clearish fluid. They measure the amount of drainage and she was down to about 20 cc’s a day but then 2 days ago, the total amount of output was 270 cc’s. Yesterday the total out was 190 cc’s since they stopped the feeds. So, we are going in the right direction.

 She is NPO (nothing per oral), meaning no feeds into her stomach. The plan is to dry her out completely, which could take days or weeks. They need that drainage to measure under 10 cc’s a day. Then we wait for another 4-5 days while she is dry for that chest cavity to close up and heal. The lymphodes will not heal up by then, but the cavity should close up without all that fluid in there. When the cavity closes, the fluid has no where to leak out forcing the fatty fluids to stay within the lymphatic system.

If and when they try to feed her after giving it time to heal up and it still leaks out, then they will ahve to perform a surgical procedure called pleurodesis. This involves injecing antibodies into that chest cavity causing it to become “sticky” so that the lung will stick to the chest wall like it is supposed to. This will force the fluid to stay within the lympatic system. Phew. i hope that made sense.

This is a setback that could be months.  I am so disappointed, but I know it is not the end of the world and I know she will get through this. I was REALLY hoping she would be home by the time school starts. Little Ethan starts first grade and Thomas starts pre-school. Balancing being here and being there is going to be a tremendous challenge. And not to mention my mom and sister have to go back to work after summer is over…I really have no idea what we are going to do.  I can hear you all saying it to me…one day at a a time. It’s just a mother’s anxiety at work here.

Love,

Teri

Comments { 6 }

Tuesday update

She is staying strong but today we had a bit of a setback. The drainage from her chest tube increased yesterday by 100 cc’s. The docs are contributing this to the feeds of the formula she is on. They have stopped her feeds and have to wait until the lymphodes that are leaking heal. THis could be days, weeks…months. It is not the end of the world, but certainly a setback. She will not be able to feed until that left pleural chest tube comes out. She continues on with the TPN and lipids for nutrition. Disappointing, but at least her life isn’t threatened.

She is still on methadone and valium, so she is comfortable.

I can’t send out emails at the hospital and I wanted to know if  Michelle A. had the baby yet?  I am sure Ethan will find out at Tee ball tonight from your hubbie, but I wanted to let you know I am thinking of you too.

Love,

Teri

Comments { 4 }

no IV!

They don’t need to  give her another IV.  I am so relieved. They have replaced the heparin with another drug called lovanox, which is an injection into her thigh once a day. Both the drugs are anti-coagulants that she will need her entire life. When she goes home, she will be on aspirin.

So they now can infuse the lipids into her PIC line along with the TPN and those 2 are the only ones bring infused introveneously. She is resting comfortably and having another great day.

Love,
Teri

Comments { 12 }

Monday Rounds

The docs rounded on her finally. They have discontinued 2 of her 3 antibiotics. They are going to stop the vancomycin and the sephapim (sp?). They will keep the fluconazol, which is an anti fungal. Her temperature has been maintaining at a normal reading. Her white blood count is a little low, but not so much to be alarmed. Everything just needs to be watched.

They are going to try and keep the milrinone drip off and see how she responds. The drug takes 6-12 hours for its effect to wear off and it has been about 12 hours, so they are going to see how she tolerates being off that heart med.Her blood pressure is at 69/41 with a mean of 52 and her heart rate is at 137!!  Awesome numbers.

The only procedure scheduled for today is to try for that peripheral IV again. Dr. Neibler, one of the critical care attendings is going to try. She has not received any lipids for about a week. The lipids are the fat she needs to provide calories. She is getting some through the formula trophic feeds, but not enough. The lipids cannot be mixed with the meds and they take a long time to infuse, so they cannot use the PIC line that is in her foot. So, it’s an access problem. If Dr. Neibler cannot an IV in, then they will have to up her feeds faster than average. Last time they tried for an IV, it was terrible. It is hard enough to get a line into an infant, but an infant with a heart defect is even more difficult because their little veins are even smaller than normal. To watch her get poked and stuck over and over is heart breaking. She cries, screams, then begins to wail and eventually, she just surrenders and lays there staring at the ceiling while they do what they need to do. I hold her hand and tell her she is doing great. She is tough…I know she can take it.

I know that all of this suffering that she is enduring is bringing her closer to Jesus. It is difficult for us to understand, but then again, we are not supposed to understand all of this.

“For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too” 2 Corinthians 1:5

She is my tough little girl.

Love,
Teri

Comments { 0 }

Monday morning update

She had a good night. The nurses gave Gabi her scheduled doses of captopril and methodone last night and for some reason her blood pressure dropped to 53/19 with a mean of 29. They gave her some albumin and turned off her milrinone drip to raise that up a bit and it did work throughout the night. She is now at a  mean of 41, which still isn’t great, but much better. The goal is to get her off that milrinone drip anyway so we’ll see if the docs want to turn that back on or just leave it off and see how she does. Her feeds are still on at 5 ml/hour and so far all the cultures have come back negative from her fever spikes. This is great and they are contributing those fevers due to withdrawal symptoms. They upped her methodone dose on Saturday and that has helped her to be really comfortable.

On Friday when I got to the hospital, the fever was just starting to rise and the nurse was a little concerned, within an hour, there were 2 docs, a PA and our 2 nurses putting ice  on her body and trying to calm her down. They had the pacemaker on her bed ready for them to use to lower her heart rate. Scary stuff. But since then, she is doing much better.

We pressed the nurse this weekend for a time frame and she guessed Gabi could be going home in about a month. How exciting is that!!  The next big step is getting that last chest tube out, getting her off the oxygen and getting her to eat. Hopefully we will find out for sure about her vocal cords in the next few days. To me, her voice seems stronger everyday, but she still sounds a little breathy and gaspy, so we’ll see.

My friend AnneMarie and her daughter Marybeth came to meet Gabielle on Saturday.  It was so great to see them. And they brought with them 2 bags of collected gifts and cards from my Holy Angels friends.  Thank you all so much for your thoughtfulness. You all continue to inspire me and lift me up during all of this. I miss you guys.

I really tried to get a new family picture this weekend, but it just didn’t work out. Marissa got stung by a bumblebee, so she wasn’t in the mood. Here are a few pictures I did get.

Marissa post bee sting

Marissa post bee sting

Ethan visiting with his baby sister

Ethan visiting with his baby sister

Dad and Thomas holding Gabrielle's hand

Dad and Thomas holding Gabrielle's hand

Brothers

Brothers

The bow was from Carsyn's parents...so cute.

The bow was from Carsyn's parents...so cute.

Swaddled up like a regular baby.

Swaddled up like a regular baby.

The next few pictures are from the Ronald McDonald House. They got balloons from this restaurant in town and were allowed to play in their underpants. Life doesn’t get much better for them.

Pic9

dsc_00034

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This is Gabrielle's monitor with all of her numbers that we stare at all day. Look at that heart rate!  144!! Lowest it has ever been.

This is Gabrielle's monitor with all of her numbers that we stare at all day. Look at that heart rate! 144!! Lowest it has ever been.

Thanks for all the love and support everyone.

Love,

Teri

Comments { 2 }

Weekend Update

It’s amazing how difficult it can be just to get to a computer her. She is doing great!  Last week was really scary with the heart rate peaks and the fast breathing, but she is stable and doing awesome now. Friday night when we got into town was a horrible night. I was here until midnight and there were doctors racing in and out of the room. She had a fever of 38.6 degrees celcius and her heart rate was again up to 220. They needed to get a blood culture and had to have 3 different people to get the sample. We have not gotten the results of those cultures back yet, but so far nothing has grown.

Good news today is that she is back on her trophic feeds of Enfaport at 5 ml/hour. They took out her middle chest tube so she is down to just one, the left pleural tube.  Yeah!  She is swaddled up like a regular baby!  EThan and I have both held her a couple of times now. It is just great.

We are headed home and I will post more details later. 

Love,
Teri

Comments { 3 }

Plans for today

The docs made some changes with her today. We are scheduled to chat with either Nacny or one of the fellows to get a general assessment of how she is doing. They are starting trophic feeds with a formula called Enfaport, starting at just 3 cc’s/hour to get her belly going again. They discontinued all of her diaretics until further notice. She is quite dehydrated and that can contribute to her high heart rate. They are also giving her a blood tranfusion to give her vascular system more volume and that should really help her heart. She is still hanging around 185. Her oxygen is back on the high flow at 30% oxygen. She was at 100% oxygen and a lower flow, but Gabi needs more pressure with the high flow and less oxygen. Her O2 says remain at about 92. This can vary so much with the babies. They have discontinued the digoxin for now but she is still on milrinone and captopril for her heart. I think that is all the changes for now.  And now we wait to see how she responds.

She is comfortable and sleeping right now. Thank goodness. The withdrawal tends to keep her wide awake, and she needs sleep in order to heal, plus babies need sleep.

Ethan Jr has been busy packing up all morning to head to Milwaukee. Which that means the entire house is torn apart because he feels he needs to bring EVERYTHING. We are all very excited to see her.

Love,
Teri

Comments { 2 }

Heart rate peak

Gabi is stable. My mom was there all day yesterday and into the night and Gabi’s heart rate at one point peaked to 230. She had 2 docs and a fellow and several nurses by her bedside trying to calm her down. The floor has been so busy with so many sick kids maybe this was Gabi’s way of saying…hey what about me?  She was started on 2 new heart meds yesterday, digoxin and captopril that may have caused this…but the docs doubt that is why. (Thanks to my heart moms, I guess these are 2 meds she will go home with and continue with until future surgeries). Sometimes there just isn’t a reason for these episodes. They gave her a med called adenosine to get that rate down and it did after an hour or so. The docs explained that as long as the heart is able to calm down and it doesn’t stay above 200 for too long, then this isn’t dangerous. Of course, it is alarming, but at least she is able to calm down. They continue to give her morphine and midazolam to keep her calm and relaxed.

Her chest drainage is way down…I think total for yesterday was around 80 cc’s. So that is great. They continue to tweek her oxygen levels and all of her meds, for pain control and control of her sats. I feel a little better today, a much more positive attitude. I think hearing from so many of my heart mom friends knowing that we are not alone and that kids do pull through this is so encouraging. we are headed up there later today and I will get to see her, so I know that helps too.

And I shouldn’t be complaining, the unit is crazy with so many sick kids and there are so many families that are worse off than Gabi.  It’s all about perspective.

We’ll see what the docs say at rounds.

Love,

Teri

Comments { 1 }

Confused

I know Gabrielle is getting better but I am just confused. It just seems like one big step and then 5 steps backward.  She is breathing really fast at a respiratory rate of over 70 breaths per minute. her heart rate stays at about 175 and ranges from 160-210.  These are so nerve racking to me. Her o2 levels are too high for her, hanging at around 92%, which means that the O2 is not perfusing through her body well. I am trying to understand everything they tell me, but I am just so confused. She has been on Milrinone, a positive inotrope, to strengthen her heart. And they took that dosage drip down from .5 ml an hour to .25 ml an hour yesterday. But then they added Captopril last night, an oral med (that of course, she threw up) and now on rounds they just added another heart med called digoxin.

They are lowering her O2 amount that flows into her cannula through her nose, but then her lung pockets keep collapsing too. I just don’t understand. Every time there is a new milestone, there are so many other obstacles that make my head spin. And the docs are awesome but they come in for their 45 second evaluations and then are on their way before I even have time to process what they said and form my questions.Then I have to ask to see the doc again and wait another few hours…

Speech came by already today and they  just worked with her on her pacifier dipping it into her breastmilk. The nurse said she tolerated it just fine. They are still giving her a little bit of time before they can really evaluate the damage, if any, done to her vocal cords.

I am just having a frustrating day…and it’s so hard not being able to be there. Thankfully, my mom is there today and can be Gabi’s advocate for her.

Love,

Teri

Comments { 4 }

Pictures

For Thursday morning, she had a rough night. Just really uncomfortable. They finally gave her a dose of methodone for the treatment of her withdrawal symptoms and then she got a dose of ativan for her anxiety. She is sleeping comfortably now. We’ll see what they say on rounds.

Here are several pictures from the past few days.

Afterthey extabated her. You can see her face!! Notice no ng tube. She didn't like that either and decided to just pull it out.

Afterthey extabated her. You can see her face!! Notice no ng tube. She didn't like that either and decided to just pull it out.

They replaced the ng tube.  She looks so much more comfortable without the breathing tube.

They replaced the ng tube. She looks so much more comfortable without the breathing tube.

Holding her for the first time in a month!

Holding her for the first time in a month!

So happy!

So happy!

The nurse and speech getting ready for her first speech consult

The nurse and speech getting ready for her first speech consult

The speech therapist holding her..."who do you think you are lady?" Her heart rate was up to about 200 at this point.

The speech therapist holding her..."who do you think you are lady?" Her heart rate was up to about 200 at this point.

Speech trying the bottle for the first time in her life. She is not quite sure and her heart rate was up to about 215 at this point.

Speech trying the bottle for the first time in her life. She is not quite sure and her heart rate was up to about 215 at this point.

This is not working.  Heart rate increased to 225...time to put her back in bed.

This is not working. Heart rate increased to 225...time to put her back in bed.

This is her room. Look at how many machines are gone!  I know it sill looks like a lot of equipment, but she is down to about half.

This is her room. Look at how many machines are gone! I know it sill looks like a lot of equipment, but she is down to about half.

That is me trying the pacifier. She actually liked it despite the indignant look on her face.

That is me trying the pacifier. She actually liked it despite the indignant look on her face.

Love,

Teri

Comments { 2 }

One month post-op

I GOT TO HOLD HER THIS MORNING!!!! It was awesome. They put her on a pillow and had to pin all of her lines down but I rocked her in my arms for over 2 hours.  Her heart rate was fairly high all morning, at about 185, but when I was holding her it got down to 149.  She just stared at me wondering what was going on.

I can’t believe her surgery was one month ago today. Seems like yesterday but also a million years ago. She had kind of a crabby morning, but they thought she was quite a bit dehydrated, her soft spot was completely sunken in. So, they got rid of one dose of a diaretic and cut her lasix dose in half.

They weaned her oxygen flow down this morning from 6 to 4 and this afternoon they changed her settings from this high flow oxygen to a regular cannula oxygen. She is breathing really fast in my opinion, but apparently that is normal. Her respiratory rate is hanging around 65 breaths per minute.

The big change today was the docs ordered a speech consult. Now that she is extabated, they need to work on her oral skills. She has lost the natural sucking reflex but I guess she can re-learn that skill. I was so excited for this speech time because we can learn if her vocal cords were damaged or how quickly she will catch on to feeding. To say the least, it was a disaster. The speech therapist picked her up in the same fashion as i had, with the pillow. From the moment Gabi hit her lap, she was totally stressed out. The speech therapist tried the pacifier but Gabi wanted nothing to do with it and it just escalated from there. Her heart rate soared to 225 and her renal sats dropped into their 20′s. We tried to calm her down for about 10 minutes but had to put her back into bed. It took over an hour and a hefty dose of morphine to get that heart rate down even to stay below 200. I guess she wasn’t ready for that. The doc said she had a lot going on right now just trying to breathe and get off of all the narcotics she has been on. Poor thing just got pushed too far. She has recovered nicely and is doing fine now.

By tonight, she actually did suck on the pacifier for me, so that is great progress. They may try and just feed  her through her ng tube just to get her started on some nutrition.

So the next big milestone is getting those chest tubes out and getting her to start feeding and getting more mobile. It breaks my heart even more now leaving her here.  But she is so strong and such an unbelievable fighter. These little heart babies are all so amazing. It was hard today getting so excited to see her actually eat on her own and then it crashed down hard, but we are celebrating every milestone and I know she’ll get there soon enough.

Of course I took a whole bunch of pictures…I will post them tomorrow when I am home.

Love,

Teri

Comments { 5 }

Night cap

Gabrielle is doing great. Her Respiratory rate has calmed and she no longer is heaving for breaths. There is a little retraction but not like this morning. Her O2 sats are in the upper 80′s and lower 90′s, which is right where they want them.

They replaced the ng tube for her meds and she really didn’t like that, but it had to be done. Her fluid output is getting better each day. Total for today so far is around 100 cc’s.  I am so tired, I feel like I could collapse. Being here at the hospital is very emotional. When your child has a good day, there is always someone down the hall that is having a really rough day. There are still 2 babies on ECMO and there was a couple surgeries happening today. You can’t help but care for those kids and want to reach out to the parents in the adjoining rooms.

Speaking of adjoing rooms…Gabi’s sano sister, Carsyn in the next room over from us is waiting for a heart. I know she will get one on God’s timing and then it will be one surgery for her and she will be heart healthy!  The prayers everyone is offering up for Gabi are working, so if you could add little Carsyn and her family to your parents, I know God is listening and I know her parents would appreciate it.

Now that Gabi is totally alert and off all of her drugs, it is even harder to leave her, even just to run out to get some lunch. But we will make due…and she is doing so awesome, we can actually see a light at the end of this tunnel!

I have received all of your comments, emails, voicemails…thank you all for your support and prayers.  As I have said before, they are carrying us through this. 

Love,

Teri

Comments { 3 }

Hour by hour

We had a bit of a scare for a little bit but she is doing better now. She was on this CPAP oxygen mask that provided not only oxygen but also quite a bit of pressure pushing it into her lungs. Last night, she was not tolerating that at all, so Nancy put her on just regular hyperflow oxygen. She was much better with that. Her flow rate was set at 6 (not sure of the units) and her oxygen percentage was set at 30%. They all decided to start to turn that down at rounds today. The nurses changed her flow rate to 3 and she almost immediatly freaked out. Her heart rate skyrocketed to over 200, she looked more pasty and pale then normal, and her chest was heaving in for breaths. She wasn’t crying, but she looked distressed. The nurses wanted to give her a minute, but I insisted they call the doc. The fellow came in and then called the cardiologist and Nancy. They turned back up the rate to 6 but still her chest was heaving and her heart rate was hanging at about 198. They called for a chest x-ray stat and from that they could tell that pockets of her lungs had collapsed from dropping that pressure too quickly. Slowly, slowly, she is recovering from this episode, she is still heaving a bit, but certainly not as much. She will be able to push out those collapsed pockets hopefully on her own. They may have to try the CPAP again if she can’t do that on her own. Her heart rate is down to about 175 now and her color looks better. Her oxygen sats got down to about 80%, which actually for these Hyploplast kids isn’t that low.

So, her oxygen sats are a peculiar number to me. It has taken me a while to fully understand this. A normal person has 100% oxygen sats when they are healthy. I remember taking Thomas to the hospital a few years ago for RSV and his oxygen levels fell into the low 90′s so they admitted him. But for Gabi, her oxygenated and de-oxgenated blood is mixed, so it is a fine science of getting the right amount of oxygenated blood to her lungs and to the rest of her body. So, the SPO2 number that is on her monitor specifying her oxygen sats should be around 85%. After her next surgery in a few months, that number should be more in the 90′s. (Any hypoplst parents reading this, feel free to correct me). Gabi’s number is hanging in the low 90′s, whcih is actually too high for her. That means that too much oxygenated blood is going to her lungs and could cause a “wet lung” or fluid build up, which would not be good. Nancy also said Gabi has a sizeable sano (the shunt in the heart) and that could cause too much blood to go to her lungs. This totally freaked me out…I thought she was telling me that they put in a shunt that was too big for her. Not the case. She will grow into the shunt and when the oxgen assistance is turned off, her sats will be in the right place. Needless to say, she needs to gain weight now and they are watching that number very closely.

It is so unbelieveably awesome to be able to hear her from across the room. Just the little gurgle noises and of course the gagging she’s got going on from the withdrawal I can now hear lound and clear. In the next few days, ENT and speech will come evaulate her to see if her vocal cords were damaged and to start feeding her. I don’t know what she weighs, but she is so tiny. She is hardly on any meds anymore. She is on milrinone for her heart, heparin whcih is a blood thinner, TPN for nutrition, tylenol and that is it!!  She is going through quite a bit of withdrawal and they still might put her on methedone to treat the symptoms.

I love seeing her face and hearing her gasps…certainly makes me so grateful for everything we have in this life.

Love,Teri

Comments { 3 }

Breathing on her own!!

She is extabated!!!  They took out the breathing tube last night and watched the numbers VERY closely. There is still a risk that she could be re-intabted, but this morning, they TOOK the ventilator out of her room!.  Thats got to be a good sign, right?  I think so. I can actually see her face and HEAR HER!  It is so unbelievable…for the first time, I cried happy tears this morning when I could start to hear her gurgle sounds. She sneezed and coughed and I could hear it. 

by the time I left the room last night at midnight, all the computers room s were locked so I couldn’t update. I don’t want to miss rounds…I will post more soon. We are just so thrilled

oh- and she pulled out her ng tube on her own…I guess that was pissing her off too. I don’t blame her.

Love,

Teri

Comments { 4 }

Taking out the vent tonight!

I just talked to the nurse. She said Dr. nancy is going to come by after night rounds, in about an hour, to start taking out the vent. I guess it is a few hours process, but they think she is ready!!  I am heading up to Milwaukee in about 15 minutes….will update soon.

Glory be to God!

Love,
Teri

Comments { 0 }

Weekend Update

Gabi had a busy weekend. Her vent is not out yet, but they continue to tell me “maybe tomorrow” or “def. in a few days”. We’ll see.

Her Epi is OFF!!  Fantanyl is down to 1 and that needs to be off also in order for them to extabate. She is going through a bit of withdrawal still but the docs are not convinced it is significant enough to treat the symptoms with methodone yet. She was extremely uncomfortable this weekend, so they are trying to find a pain control plan that keeps her awake enough but also comfortable enough to heal herself. Ethan and I, for the first time, got really frustrated with the medical decisions they were making. For example, she is on lasix to help her pee but they are wanted to give her another diaretic orally. I forgot what it is called, but they put it down her ng tube and she has thrown up every single dose they have given her. I was there Saturday night with her when they tried this med for the 4th time and sure enough she puked it up. I was there until midnight holding her to her side so she didn’t choke on her vomit. And then they had the med scheduled again for the next day!!!  Hello??  if she has puked up all 4 doses, maybe she isn’t tolerating that too well. Ethan got to be there on Sunday morning for rounds and he insisted they not give her that med again and they did agree. I was there later in the afternoon when they tried a different diaretic, also given orally, and she tolerated that one just fine.

So before Saturday, Gabi had 2 ways of getting meds introveneously. She had an RA line that went directly into her heart from her chest. She also had her Pic line that goes into her foot. Well, the RA line somehow became dislodged so they needed to remove it. Some of the meds cannot be mixed and some of them take a long time to give (ie albumin is over a 3 hour period) that really cannot be done with her continuous drips. They needed a new peripheral line ( an IV). So, one of the nurses tried and couldn’t get a line it, then a resident tried, and finally Dr. Hoffman, the chief of anesthesiogy, tried and even he couldn’t get a line in. She literally has bruises everywhere on her body. The other thing they could try is doing a central line, typically through your groin or your neck. The docs decided they didn’t want to do that because of the possible damage to her veins. And they will need those for future surgeries. I would like to think it is because she is almost off all of her meds that they wouldn’t need to start a more permanant line being this far into her recovery :) So as it stands right now, the nurses just need to plan accordingly with the meds and just use the Pic line. From now on, we will INSIST that only an attending doc be able to stick her.

Over the weekend, she did not sleep at all. She was wide awake and very uncomfortable. Yesterday, she was a bit more restful, but certainly not sleeping. On yesterday’s rounds, Ethan and her nurse insisted the docs find a pain control and comfort plan for her. The fellow and the attendings will meet this morning and figure something out. It is frustrating when they just continue with the usual meds that just don’t work for her. I know part of it is withdrawal and I do realize that pain cannot be completely taken away, but common sense has to play a role in this somewhere. Like i said before, this is the first time we have been frustrated. But they have responded well to our concerns and answered all of our questions.

That all said, she is still looking good. Her drainage is down to about 200 total for the day, so every day is getting better. As all of this going on, I really do not like being away from her. She needs an advocate by her side. But I will head back up tonight when Ethan gets home from work.

The kids had fun exploring the beaches in Milwaukee this weekend and of course, staying at the RMH is always a big slumber party for them.

We came home last night to a friends’ dinner (thanks Langs!!) and a clean house!  Thanks Suzie. I continue to feel so blessed with all of the help we have received.

Love to you all,

Teri

Comments { 4 }

Labored breathing but hanging in there

They weaned her ventilator down even more today and she is breathing fast and hard. The docs are keeping a close eye on her and Gabi is def. telling them she is not quite ready to have the vent removed. They are giving her a couple of days for her muscles to strengthen and breath at a more steady pace. Hopefully that will happen soon.

They weaned her fentanyl down to 3 so she is very awake now and it is tricky to keep her comfortable while trying to wean her off this narcotic. She is becoming quite tolerant of several of the meds, so they have to either give her more or try a new one. They also took her Epi down to .02 from .04, so they are certainly pushing her today to really start working hard.

I know she will do it…she is such an inspiration to me and Ethan. She is so strong and just keeps on fighting. That’s my girl!

Thank you for the lunch and dinner today and this past week, month…etc.  We couldn’t do this without all of the unbelievable support we have received.

Love,
Teri

Comments { 5 }

One month cont.

I am home and just talked to Suzie, another fav nurse. The docs weaned her fentanyl down even more to 3, so she is a lot more awake and with that comes being uncomfortable and agitated. But they are able to give her doses of morphine and atavan as needed.It just breaks my heart when I am not there to be able to comfort her, but I know she is in good hands.

Big news is another chest tube got taken out!!!!  Her right pleural chest tube got removed, so she is down to 2 drainage tubes!!  I am thrilled about this…they look so uncomfortable.

It is great to be home and see my 3 older kids. We went to the pool and I got a chance to show off my post pardum hot bod! Awesome.

I can’t believe my baby is a month old and I have only held her twice. I know our time will come and I will praise God when it does happen. I used to be so scared about Gabrielle’s survival, but I decided to just refuse to be afraid and love with all of my heart. I often read Mother Teresa and this is my favorite quote that I repeat to myself… “love till it hurts.”

“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” -Mother Teresa of Calcutta

Ethan Jr. made this crown for her last weekend. I think she likes it :)

Ethan Jr. made this crown for her last weekend. I think she likes it :)

Taking Names to see who is poking at her now

Taking Names to see who is poking at her now

They have these bean bags and gel pads to tuck under her legs and to keep on top of her to simulate being held

They have these bean bags and gel pads to tuck under her legs and to keep on top of her to simulate being held

This is her pic line in her foot. Most of her meds go through this IV

This is her pic line in her foot. Most of her meds go through this IV

This is her right foot where they have an RA line in. This is a sensor that goes right into her artery to measure blood pressure. Usually these are in the wrist and/ groin area, but they couldn't a line into those areas, so she has one in her foot.

This is her right foot where they have an RA line in. This is a sensor that goes right into her artery to measure blood pressure. Usually these are in the wrist and/ groin area, but they couldn't a line into those areas, so she has one in her foot.

This is her right hand where they are measuring her oxygen levels.

This is her right hand where they are measuring her oxygen levels.

Okay, so I have had 2 beers with my wonderful husband, and I need to pump…the pumping isn’t going that well, so whatever I have is a precious commodity at this point.  Do I save the beer infused breastmilk or dump it???

Thanks everyone…we love you all for everything you have done for us.

Love,
Teri

Comments { 4 }

One month!!

Sorry for the lack of a post yesterday. I was pretty tired and just never found the time to get to a computer.  It’s amazing how quickly a day can go by sitting in a hospital room.

Gabi is doing OK. They are still waiting for her edema to go down. They have weaned her fentanyl down to 4. Fentanyl is a narcotic she has been on for sedation and pain, so she is going through a bit of withdrawal. Her symptoms are yawning quite a bit, shakiness, hiccups, and agitation in general. She is not too terrible yet, but they are keeping an eye on that, and of course, there is another drug (methodone) they can give to her if her withdrawal symptoms worsen.

She is still on the EPI, just at .04. The drainage out of her chest tubes is lessening, but still a lot. Her total output yesterday was 300 cc’s , compared with over 600 cc’s jsut a few days ago. So, we are definitely moving in the right direction.

They haven’t rounded on her, but I suspect they may remove 1 of the 3 chest tubes today…maybe. That would be awesome!  They are still waiting to extabate her for a few more days. Although her vent rate is down to 8, so she is breathing quite a bit on her own.

I am headed home after rounds today, so I will post more later. I can’t believe she is a month old!  She is God’s gift to us, just as all of our children are.

Love to all,
Teri

Comments { 1 }

Broken record

I feel like these posts are a bit repetitive, but I suppose in these situtaions, no news is good news. Gabi is doing well today. her edema (fluid from the swelling) is feeling much softer and she is looking a little skinnier. They weaned her ventilator down a bit so she will be breathing more on her own. Nancy assures me she is slooowly healing and everyday they find something to push her just a little more, but not too much and then try and maintain her comfort level. We have almost been here a month…I can’t believe it. There are now, I think, 7 HLHS kids on the floor all at different stages. So, we are all in good company.

My mom says the kids are doing well at home and once again we have neighbors that are bringing us dinners this week. God is good and we will get through this.

God bless,

Teri

Comments { 9 }

Epi back on

They started her Epi drip again, but only at .04…a low dosage. They are focusing on trying to get her swelling down and gone and without upping her dose on lasix. Their thought process is if they get more cardiac output (the purpose of the EPI) then she will hopefully pee more.

She was really uncomfortrable when I got here, but my fav nurse Jacki was a great advocate for her and gave her some atavan, even though the dose bottomed out her blood pressure. Her pressure went as low as 42/20 with a mean of 39. Her mean should hang around 50.  But the docs are aware that atavan does have that effect on her and all her other numbers remain stable, and she is comfortable. As jacki says, it’s cruel to allow her to stay uncomfortable just to keep the numbers where the docs want them. She’s the best! So, they rode out the low pressure and it is increasing now as she wakes up.

They are talking about putting a central line in so they can take out her cardiac lines (lines that go directly to her heart). They aren’t talking about removing the breathing tube yet until she can get rid of the fluid. They explained to me the reasoning for this. It is because there is fluid all around and on top of her lungs and if  they remove the breathing tube, the fluid is just too heavy for her her to inflate her lungs. She is breathing “over” the vent, so the breathing tube at this point is just assistance for her.

Nancy (Dr. Ghanayem) has called our neighbor in W314, adorable little Carsyn, and Gabrielle the MRSA twins. Carsyn had her surgery May 27th and is waiting for a new heart. But she has the same or similiar issues as Gabi with the MRSA, the fluid and fluctuation of numbers. Carsyn’s parents and I think they are conspiring during the night figuring out how to make our lives more exciting. Hilarious, aren’t they?

She looks good. It is good to be here. We are hanging in there and thanking God Gabi is slooowly getting better.

Love to all-

Teri

Comments { 6 }

Slow and steady

Gabi is holding strong, but nothing that new to report. They took her off 2 of the 4 antibiotics she was on. Her Epi is still off and they have weaned the fentanyl down to 8. The drainage tube on her left is still putting out way too much fluid. At this point, the babies SHOULD be down to about 300 cc’s per day. The left plural tube (which drains fluid collecting around her left lung) put out 370 cc’s alone yesterday. So, they are focusing on getting that under control. She is much more awake and does this gagging thing that looks so uncomfortable. But like I have said a million times, the nurses at CHW are so outstanding…I know they are taking good care of her.

We had a wonderful 4th of July at home, but she was terribly missed. I felt incredibly incomplete without her home. I felt a little guilty having fun with my family and friends knowing that my baby girl is laying in the hospital. Mother’s guilt….what a unique and draining emotion that you can never put into words.

I think this is the longest stretch I have gone without seeing her. It will be 2 1/2 days. I cannot wait to see her big beautiful eyes tomorrow morning/afternoon.

Love to you all-

Teri

Comments { 1 }

Happy Fourth!

Happy 4th of July everyone! We enjoyed the parade this morning and will have both the Coleman’s and the Danstrom’s over this afternoon. I think the only people missing will be Gabrielle and Connor (who is in Costa Rica for a mission trip through seminary school…we miss you Connor!). Next year, I can’t wait to have Gabi on my lap watching the parade.

She is doing well today. Her Epinephrine is off!!! And she is tolerating it well, which is great news. She is also off the Ketamine which was to help sedate a little and for pain. They are giving her morphine and atavan as needed. Even though  these don’t have much of an effect on her, they needed to get her off that Ketamine. She is still on Fentanyl for pain as well. She is on 3 antibiotics  for the MRSA and still Milrinone for her heart. They also put her on another diaretic (sp?) along with the lasix to help her pee off that swelling. Her chest tubes are still draining quite a bit of fluid, so they are holding off on removing them. Nancy (Dr. Ghanayem…the docs all insist on us calling them by their first names) did say that hopefully this week we will be extabating her and removing those tubes. From what I have heard, the chest tubes are the most uncomfortable things through all of this.

One benefit of driving through Wisconsin is we did pick up a whole bunch of fireworks, so hopefully the rain will hold out and the kids, Big Ethan and the uncles can blow some stuff up.  God bless America and blessings to everyone…

Love,
Teri

Comments { 6 }

Contact Isolation

She tested positive for MRSA. Luckily they caught it fairly early as she had no signs. They ran some routine cultures and MRSA did grow. She is now on contact isolation, which means anyone that comes into her room has to put on a scrubs gown and gloves. This won’t slow down her progress, but it is a bummer. Touching her was the only way to really connect and love her and now it is through latex gloves.

Her numbers are all OK, bouncing around a little bit, but they are tweeking things as needed. Dr. Nancy and Tweddle are back, so it was nice to see them and get their opinions. Although, Dr. Rao and I were bonding, I enjoy his sense of humor.

The whole family drove up to Milwaukee and big brother Ethan got a chance to visit with her. She held his hand and he touched the side of her cheek. He asked a bunch of questions, including does anything hurt her.   He was beaming when we left. He loves his siblings and he said he couldn’t wait till Gabi gets home.

She received some blood today because her proteins were low. She looked pretty pale and blue, but they are keeping an eye on every possible stat they can get their hands on.

The next short term goal is to get her swellling down even more, take out at least one chest drainage tube (she has 3 right now, it was 4 a few days ago), and to get her extabated. So, she is on the right track…just moving at her own pace.

HAPPY 4TH OF JULY EVERYONE!!

Love,

Teri

Comments { 1 }

Good day cont.

So far, she is doing great with the chest closure. With the added resistance her heart is now working against, it is expectedly a critical time after this procedure. But she is doing well. Her numbers fluctuated a bit, but she is holding strong. They are even talking about starting feeds again today…with possibly breastmilk.

We are so thankful that she is doing well. These HLHS kids are so unpredictable and they are ride on their own path. But the docs are so patient and get to know the kids as their own person. We are so blessed. Thank you all for your support!

Before

The above 2 pictures were taken right before her chest was closed.

The above 2 pictures were taken right before her chest was closed.

This is her room. W313. They are able to turn the kids' rooms into an OR in about 10 minutes. I took this picture during the procedure while chatting with some of the other nurses.

This is her room. W313. They are able to turn the kids' rooms into an OR in about 10 minutes. I took this picture during the procedure while chatting with some of the other nurses.

I know it's not a pretty sight, but she is beautiful to us.

I know it's not a pretty sight, but she is beautiful to us.

Comments { 14 }

good day.

Her chest is closed.

Her numbers look good.

Today is a great day.

Comments { 22 }

Should hear something soon…

Dr. Mitchell is closing her chest RIGHT NOW!!  They are about half way through..I will post as soon as I hear something.

Comments { 0 }

Chest closing on the schedule

For today…sometime after 12:00 noon. I am heading up to Milwaukee now.

Comments { 6 }

still on that rollercoaster

Just talked to the nurse. During the docs’ exams this morning…they may CLOSE HER UP TODAY!!!!  No confirmation yet, but she had a good day yesterday (as far as her numbers, not her comfort level) and she had a great night and is still charging ahead this morning….hands are up creeping along to the top of the hill. Yippee!

Comments { 1 }

taking names

So, when Gabi wakes up sometimes her eyes are just a slip open and I swear she is taking names to who is poking her at the moment. Today, she got poked and messed with quite a bit. Her RA line (a line that is inserted into her artery in her wrist that measures the pressure going away from her heart and into her limbs and tissues) was becoming “blanched” a term the docs used to say that there was leakage out of the line itself and it was leaking fluid and blood. It wasn’t causing her any pain, but they needed to redo her line in her foot or her other wrist. It is similiar to an IV, but more invasive. One of the resident docs tried putting a new line into her left wrist after giving her some pain meds, but couldn’t get the line in. So, the attending doc would try again in her foot later. She was fairly uncomfortable again today until the nurses finally agreed to try a new pain med. The ketamine was OK, but it only lasts an hour or so. They decided to give her droperidol that lasts for 6-8 hours. Phew. Finally she was sleeping peacefully. I asked the doc for some for me; he just laughed. He obviously thought I was kidding.

The attending came and messed with her again, but did successfully get the new RA line in her foot. Lots of silent cries that continue to break my heart. When they pulled out the old line in her wrist, the nurse was putting pressure to help stop the bleeding at the entry site, but when she let go of the gauze, blood squirted out of the wrist directly at nurse Beth!. Everyone got a good laugh, it made me a bit sick to my stomach watching my kid’s blood squirt out like that, but Gabi did get her good.

Her numbers were holding steady today…blood pressure was actually a little high because she was so mad most of the day. My friend Amy came to visit today and she was a great support as she has been through something similar with her son. As I held Gabi’s hand, Amy held mine.  Thanks for the visit Amy.

I just got home and when I walked to the front door, I saw a nice letter from a neighbor taped to our door. I was out of sad and scared tears today, but there are always an abundance of happy tears left when you read a note from a friend… AND a homemade dinner was here waiting for us. My sister was here with the kids and all was under control. We are so blessed and grateful for everyone’s kind support through all of this.

I will call everyone back and email all of those who have sent us a message as soon as I can.

Love,

Teri

Comments { 3 }

Rough night/morning but stable

Gabi is again completly uncomfortable and very agitated. She is crying and there is nothing I can do for her. I rock her little butt slowly back and forth and hold her hand as tightly as I can.

The docs explained to me that the fluid in her tissues is still sitting there. They need her body to start absorbing that fluid into her vascular system. They continue to give her albumin and FFP( fresh frozen plasma) to hydrate her vascular system. She is on lasix to help her pee off that fluid, but the first thing she will pee off is from the vascular syatem, so it is a little back and forth game that is going on. I don’t find this game amusing.

No word on any possible chest closing and no results from the cultures.

I am hanging in there….

Love to all,

Teri

Comments { 6 }

A good clean out

Like Ethan said, there was no chest closure today. I raced up to Milwaukee eager to find out the timing of the procedure. I walked into the room and the nurse, Rachel, informed me that her blood pressure had been dropping most of the morning. They had to up her Epinephrine dosage to .1. She came off ECMO on .08 and the docs needed to wean her down to about .05 to be able to close her chest. This would give them some room to be able to come back up after closing when her heart will need extra help. But she did not tolerate it today. Her blood pressure was  down to 50′s over 25 at one point. They like the mean of her blood pressure to be around 45-50 and she was hanging around 32 for most of the day. With the Epi adjustment and a dose of albumin, they were able to stablize her, but the chest closure was certainly postponed. I was completely heartbroken. Getting her chest closed is one huge step towards holding my baby girl and this was like a punch in the gut.

I was quite emotional after receiving this news and then Gabi awoke. She, for the most part, is fairly comfortable when she does wake up, but not today. It was like watching her cry through a thick pane of glass. Her mouth was wide open, chest heaving, face beat red, but she couldn’t get any noise out. She did this off and on for over 4 hours. They have learned that Gabi doesn’t tolerate adavan, and morphine doesn’t really have any affect on her, so they gave her a hefty dose of ketamine, but she was still extremely agitated.

For the first time in a while, I just cried with her and touched her where I could. I wanted to rip out all of the lines and scoop her up so desperatly. so so desperatly. There really isn’t any place to even touch her. She only has one foot that is without any lines and who wants their foot rubbed when they are uncomfortable??? She has bruises all over her body and not to mention the tape, everything is taped onto her…it looks horridly uncomfortable. I cup her head (the physical therapist told me rubbing her head can be irritating to them, so she showed me how to just cup her head in my hand and place pressure). It is the only thing I can do for her. I lean in as close as I can get and tell her everything is going be OK. over and over.

By 5:30, the surgeon came by and they decided to do some exploring. She was still extremely agitated and the anesthesiologist  came to sedate her. She finally looked comfortable. They kicked me out of the room and set up a little operating room in her room. An hour later, the surgeon told me that he was glad they opened her up again. There was some fluid pooling in there and the bandage had been on since the surgery (2 weeks ago today) and they needed to replace it. They cleaned out her chest and he had a hunch that she has some kind of infection. That might explain the blood pressure change and the way she was feeling today. They ran some cultures and now we wait for the results. Her numbers are OK now. The Epi is still up at .1 and they continue to give her albumin to maintain her volume. But she is stablized and the surgeon, Dr. Mitchell, thought they would revisit the chest closure procedure in a few days. Dr. Tweddle and Dr. Ghanayem return from their trip on Wednesday, so I am looking forward to having them back. Dr. Mitchell is just as awesome, but Tweddle is THE man.

Today, I felt like screaming “I can’t do this anymore!”  I am so tired and I am so scared. Scared of over using my mom and sister, scared of messing up my other kids, scared of loosing Gabi and hearing my husband’s teary voice on the other end of the phone 85 miles away…it was too much for me today. But then I paged through some comments left for us and one in particular got my attention. I clicked on her name and it brought me to her blog with this quote staring at me.

“When I see that the burden is beyond my strength, I do not consider or analyze it or probe into it, but I run like a child to the Heart of Jesus and say only one word to Him: ‘You can do all things.’ And then I keep silent, because I know that Jesus Himself will intervene in the matter, and as for me, instead of tormenting myself, I use that time to love Him.” –Saint Faustina

Thanks Barbara. We can do this. And so we press on…

Love,

Teri

Comments { 9 }

Peaks and Valleys

After pushing off the closure all weekend, things suddenly looked great this morning and she was scheduled as the last procedure of the afternoon for the surgeon. Teri raced up there, and made decent time to be there for the start. Before that happened Gabi’s blood pressure dropped, and it took more meds to get it back up than they would like, so the closure we were really hoping for was postponed. Right now Teri will be up there for rounds tomorrow morning and hopefully we will have some more information then. Dr. Tweddle will be back in town on July 1st, so it will be interesting to see if his arrival changes anything at all.

We were somewhat disappointed that things weren’t closed up this weekend, but were trying not to get too excited to begin with. The call this morning caught us off guard, and being surprised we probably didn’t temper our excitement as we should have.

For now it is just some more waiting and praying.

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Chest Closing Scheduled

I am really trying not to get my hopes up, but why not, right? The docs at rounds today said they would try and proceed with the chest closing this afternoon.  yesterday, they were still unsure, but today, they thought she looked ready!!  I am rushing around trying to get back up there in time.  Pray things go well for Gabi today…she has a long, difficult few days ahead of her.

Thanks for all the support everyone!

Love,

Teri

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monday morning’s schedule

Well, we got confirmation that they are definitely going to do some “exploring” tomorrow morning. Sometimes, they just need to go in and clean things up, move the tubes around, mop up old blood, change the bandage…and they will slowly try and close the chest and wait some time (20+ minutes or so)to see how she responds and then try a little more and then a little more closure. Everything depends on how well she responds. The critical care docs do not think she is quite ready for chest closure yet, but the surgeons think she is…so they will decide on the spot together.

They started her on small feeds with that special broken down formula (I forgot what it is called) to keep her stomach “in action” so to speak. The TPN and lipids go straight into her blood stream, so then her gut wouldn’t be in use. She received more blood today and additional albumin as well.  We’ll see how the rest of the evening and the night go…

We are all home now, but I am planning on heading up tomorrow morning sometime, depending on my sister and my mom’s schedules to watch the kids.

Don’t know quite how I am feeling at this point, a little overwhelmed, a little antsy, excited, sad, scared, anxious…but I have faith and keep reminding myself…one day at a time.

Love,
Teri

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Sunday morning

These posts seem to all go together…once again, there is not much new. She is hanging tough. She is receiveing more albumin and FFP to maintain a higher blood pressure. Tweeked the fentanyl and the Epi again. They will try her on the new broken down formula probably today. The TPN and lipids she is on for nutrition is giving her everything she needs, but is harder on her liver than formula or breastmilk. But of course with the damaged lymphone, the chylous drainage is just too much for them to keep her on breastmilk, for now anyway. She is still working on getting rid of all the extra fluid, the docs, of course, say possibly tomorrow for a chest closing. How many times have we heard that? But I trust them and I do want them to rush her…she is calling the shots here and the docs wait patiently for her to be ready to take that next step.

We had a nice family slumber party at the Ronald McDonald House. Thomas and Marissa sleep next to each other on the floor and by the morning, they were sound asleep on top of each other, blankets entangled. Ethan likes to have his own space…he is such a mature 6 year old. :) To the kids, coming up here is like a vacation, and I know in the many years to come, they will remember this as great family time.  Another gift Gabi has given us…

Thanks for the visit G & G last night. It was great to see you both and have you meet Gabrielle.

Love,

Teri

Comments { 0 }

New look

We wanted to lighten up the home page of the site…still tweeking it, but liking it so far.

Comments { 1 }

Morning update…nothing new

Hi all-

We are all heading up to Milwaukee as a family again, I am so excited to see her!!  Just talked to the nurse and there is nothing that new. They gave her some more blood, even though she is producing platelets on her own and everything looks good, the docs just like to have these babies “fully stocked” with blood and fluids. They gave her more albumin for more protein and fluid in the vascular system…just maintenance, neither good nor bad. They have stopped her feeds of breastmilk still because the amount of chylous was increasing. So they will give her TPN and lipids for her nutrition until they can get her chest closed.

We’ll see what they say on rounds about closing her chest. The nurse was guessing that they will say to wait one more day.

One more thing…Happy Birthday to my dear friend Lisa!!  You have been there for me for as long as I can remember. I love you dearly and wish you were here with me through these weeks. Thanks for all of your support and I hope you have a wonderful day with your family. Love you.

Will post after rounds.

Love,

Teri

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My little peanut

dsc_00024

Comments { 13 }

Still more waiting

The docs looked at her this morning and agreed that she is just still too swollen to close her up.  Her blood pressure continues to go up and down depending on how awake she is. Her feeds are up to 16 ml of breastmilk per hour, which is great. Her Epi is up at .07 ml per hour. They lowered her yesterday from .08 to .06 and now she is right in the middle. This game they play to perfect the numbers can get a little tiresome.But we are all holding strong and especially Gabrielle continues to fight every step of the way.

We continue to just hold steady.

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Getting closer

Baby steps have progressed to a possible chest closing as soon as this afternoon/evening!! Most likely it won’t happen today, but as we have learned, you just never know. She is holding strong and fighting this every step of the way. The chylous seems to be diminshing just a little bit. The fat in the breast milk so far is too much for her body to absorb because of the damaged lymphonic system. To combat this, they probably will switch her to a special formula where the fat and proteins are already broken down for her. They will wait until her chest is closed to make that switch because they don’t want to have to face any allergic reactions/ or stomach reactions to a new formula right now. She would stay on this formula for 6 weeks until her lymphodes can heal up. Stinks, but what are you going to do. WE are rolling with these punches now.

Her red blood cell count showed their might be a slight infection so they ran a bunch of cultures from her blood and urine to see if anything grows to prove an infection or not. She is much less swollen and they are still tweeking the meds as she needs it. Down on the Epi, down on the vent, up on others…But her numbers are all staying strong this morning.

When they do close her chest, then the “game” of tweeking meds and watching her numbers starts all over.With the chest open, there is plenty of room for her lungs to inflate and for her heart to pump. But when that chest closes, there is obviously more resistance for her heart and lungs to work against, so it will be another critical time for her a day or so after they close her up. But then she will be on her way to healing and that much clsoer for her Mama to hold her!!!!

Hopefully I will be able to post a chest closing schedule today!

Love,

Teri

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More meds

They are still tweeking all of her meds. Their short term goal is to get  her chest closed. She was so awake today that she became too uncomfortable and that changes her oxygen levels and all of her numbers, so they put her on a Katamine drip to help her stay more sedated.

She spit up a large amount twice today, so they pulled back on the breastmilk feeds to half the amount. She had hiccups a few times today that looked excruciatingly painful. She tried so hard to cry but being intubated, she can’t. Her grimaced face told me all I needed to know, so I got the nurse to make her more comfortable.

I love seeing her beautiful big blue eyes staring up at me but at the same time, I just want her to be comfortable, so I tell her to go back to sleep. Like the rest of my children, she didn’t listen to me at all.  I sat next to her holding her hand for hours today and she held my hand back. It is really frightening to get so attached to her because her life , and all of our lives, are in God’s hands. It is scary to love your family so much … to allow your self to be so vulnerable. But I need to feel her and love herbecause without hurting , there is no learning and no trust and that would lead to a very empty life. As I watch her numbers fluctuate and hear the alarms go off when her oxygen levels get too low, I have faith that God will show us all the way.

I am very tired and very emotional tonight. Thanks for your all of your prayers…

Love,

Teri

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Slooowly improving

One of the concerns during the surgery is that they don’t nic any other tissue that may get in the way. One of the things that does get in their way is a lymphode that helps the body absorb food. Another one, more serious concern, is the vocal cord nerve that rests right where the docs had to cut the aorta. If they do hit this nerve, unintentionally, then one of her vocal cords could be damaged and possibly paralyzed, which would effect her eating and talking. We won’t know if this was damaged until she is extabated in a few weeks.

But now that she is getting feeds of breasmilk through the feeding tube, they can tell if that specifc lymphode was damaged. And in Gabi’s sake, it was. They can tell by the fluid in the drainage tubes coming from her chest. It is called chylous. It is a milky substance that is the fat from the milk that is not being absorbed by her body. Here is the definition.

chyle

[kahyl] Show IPA

–noun

a milky fluid containing emulsified fat and other products of digestion, formed from the chyme in the small intestine and conveyed by the lacteals and the thoracic duct to the veins.

She will most likely heal herself from this, but it could cause other complications. And this does slow down the closing of the chest.  I hope I explained that correctly, I find it to be a bit confusing.

One of the med students during rounds said “Gabi was doing well.” and the attending doc corrected her and said, “I wouldn’t toss that term ‘well’ out there. She still has an open chest more than a week after surgery and she is still edema (very swollen). I would say more like she is slowly improving.” Still good that she is improving, but difficult to hear.

We are all pretty exhausted from maintaining this schedule. There really is no easy way to do this. If I am here, I am just trying to appreciate the time I have with Gabi but then I have the other kids to think about. When I am at home, Gabi is always on my mind. Please keep praying for us to have strength and persevere through this time. Gabi is a fighter. She had the hiccups again this morning and I can tell she was so uncomfortable, but she fought through them. We can do this for her and I can do this  for my husband and for my children.

Love,

Teri

Comments { 7 }

Quiet Afternoon

Gabi had a quiet afternoon. Her numbers are much more stable and the swelling has definitly gone down quite a bit.
They have begun to do feeds through her Gtube, which is a tube that goes through her nose and leads down to her tummy. They are feeding her 10 ml of breastmilk an hour and so far she is tolerating it really well. It makes me feel so good that she is getting nutrients and immunities now. She is still getting the lipids (fats) and the TPN, which is a mix of potassium, magnesium, calcium, protein…not sure what else.
Hopefully during rounds tomorrow morning, the docs can try and schedule a possible chest closing date. The nurses seem to think it will be soon.
Hope everyone is staying cool…
Many blessings to everyone
Love,
Teri

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Perseverance

She had a quiet night and morning…which is great!   They think the fluctuation in her numbers might have been due to the amount of drainage from her chest. The discharge has been decreasing, but it was still a lot. This might cause her to dry up a little in her vascular system, so they are continuing with FFP (fresh frozen plasma) and the albumin (protein solution) to help build up her blood.

She has had a nasty blister behind her knee that did finally pop. It looks so so so painful. It is just from her sweating and laying in bed. They are treating it with antibiotics and bandages. But every time they try and straighten out her leg, she pulls it back, so they know it is causing her discomfort. Poor thing.

I am heading back up in a few minutes, so I will update more in a few hours. By then the docs would have been to her on their rounds so hopefully we’ll get an update as far their plans for her.

Thanks for all of your support!!!. The dinners, gift cards, emails, financial donations to help with medical bills, help with babysitting. NOTHING has been overlooked and I promise to get in touch with everyone soon. Everyone’s thoughtfulness has been carrying us through this.

Love,

Teri

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still a bit of a struggle

Gabi has had kind of a rough afternoon. Her numbers are still fluctuating quite a bit and they can’t quite figure out why. Her blood work looked good and her cultures came back normal, which means her cell count is good and there is no infection. Great news, but the docs are still just trying to figure out what is normal for Gabi. So, because of this, they do not want to schedule the chest closing as of yet. Disappointing, but she is still hanging in there.

Can’t wait to see her tomorrow, although it is so difficult leaving home.

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Rough evening but improving

Gabi had kind of a rough early evening last night. her blood pressure dropped and her oxygen sats lowered into the 60′s for a brief time. Normally, our oxygen levels are 98-100% but in Gabi’s sake, they are thriled with about 80% meaning that her body and lungs are oxygenated at 80%. Her heart would have to work so hard to maintain anything higher than that. But through the night, they managed to stabilize her levels by adjusting her meds and sedating her a little more. But the phone call last night before we went to bed made us realize how critical she still is and everything can change in just moments. It made for a tough end to Father’s Day, BUT we are so thankful she is doing better.

She is peeing great which is wonderful news.  Her fluids are in the negative, which means more is coming out then in, which is good because of all of the swelling. So she is hanging strong still. The docs will talk today about a possible date for closing her chest.

love,
Teri

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Great Weekend

I will never take having my family together for granted ever again. The 4 kids were together for about 10 minutes and it was like my life was complete for those few moments. The weekend was awesome having the kids up in Milwaukee. We went back and forth MANY times about whether or not the kids should see her. The cardiac unit is quite overwhelming with a lot of sick kids. But we talked with the child life therapist on staff at the hospital and we decided it was better for the kids to see her than not to.And they did great!  Ethan asked what each of the IV’s were and even helped the nurses with the drainage tubes. Marissa just kept saying “that’s my baby sister.” Thomas did get a little teary when we had to leave and he wanted Gabi to come home with us. But a promise of an ice cream treat did the trick to cheer him up. They each drew a picture for her and hung it up on her bedside. And we brought a picture of the 3 of them to hang on her bed also. I know we made the right decision.

Gabi is doing great. It is (and has been, I suppose) heartwrenching to see her chest open. But she has been so heavily sedated, I knew she didn’t feel anything. But now as she begins to wake up and try to move her arms and legs, you can tell she is quite uncomfortable. Her eyes open quite frequently and to see those big blues staring at me so helpless is so difficult. I was in there last night around 9:30 and she became too awake, so the nurses gave her some morphine convinved that it would knock her out. But the morphine had practically no effect on my strong girl!  They then gave her some adavan to help with the anxiety. It still took her about an hour to settle down.

It is important for her to wake up and move her muscles around to get the fluids moving and her muscles working. But she seems to wake up too much at times. A good thing is that her numbers stay stable when she does wake up. Some kids’ numbers plummet and others skyrocket, but hers are holding steady, which is great news!!

She is starting to show signs of withdrawal from all the narcotics she has been on. She was trembling and hiccupping this morning. It looks excruciatingly painful when her little body jerks and trembles with an open chest. Poor little girl.

The docs are talking about Tuesday or Wednesday to close up her chest. They just need to wait until more of the swelling goes down. Then it is another few days of waiting and watching closely. With the chest open, her heart isn’t under pressure like it will be when the chest is closed. So her heart will have to work a bit harder when it is closed up. They contiue to tweek her heart meds and blood pressure meds as they see fit.

We are home now. I plan to go back up to Milwaukee on Tuesday. It is heartbreaking leaving her, but the nurses take such great care of her. They even made a little Fathers Day present for Ethan with a sweet poem and her little hanprints.

Below are some pictures. Some of them are a little graphic, so if you don’t want to look, don’t scroll down. Click on the picture to make it bigger.

We love you all!!!  Thanks for your continued support. Happy Fathers Day to all our wonderful Daddies.

Comments { 7 }

Waking up

She is starting to really wake up now. Her toes and fingers are flinching and I can see her trying so hard to open her eyes when I talk to her, but she just isn’t awake enough. Her head shifted just a little and her little lips are are starting to move. The nurses and docs are pleased with all of her numbers and stats, so we continue to get good news! GO GABI GO!!

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Strength

Even though Gabi is doing well, I gaze at her from across the room or over her bedside and think how am I going to keep this up for the next few months/years…I don’t know how we can maintain this schedule of traveling back and forth. It is exhausting for everyone involved. With the rain and miserable weather, my mother dealt with the kids boredom and crabbiness. Ethan has to go to work and I  sit here more than an hour away in a completely different world.

It is too overwhelming to think about our schedules. Right now, I have a plan until Sunday. And then we’ll make the plan for the next few days and then the next. To think how exhausting this is going to be is just too much sometimes. But patience, more patience and trust in God that he will give us the strength somehow to keep fighting.

I love this comment from our MN cousin. “Because true courage only comes when you have no other choice but to get up in the morning and face what needs to be faced. You do it for your children, you do it for the undying love so many have for you. ” This is EXACTLY what I needed to hear today. Thanks Amy. We will get through this and Gabi will get through this.

She is still holding strong and the docs are still tweeking meds. Her blood pressure is maintaining well and her heart rate is hanging on at about 150-155…which is right where they want it.

One more thing: for some reason, the computer here at the hospital will not let me send emails .I have been trying to send out some emails today, but couldn’t send them. Very frustrating. So I am sorry I still haven’t responded to many people’s voicemails and emails. I am getting them all and loving them so very much. They are indeed carrying us through this.

I can’t wait to see Ethan and the kids tomorrow. We MIGHT get our first family picture with all 4 kids!!!

Love, Teri

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Bath Time

I got to help the nurses give her a little sponge bath. It was difficult moving around all the lines going into her, but it was so awesome to be able to changer her diaper and touch her skin. She is so swollen she looks like a linebacker.  But she is hanging strong.

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Plans for today

I stood amongst about 10 docs all with their lab tops on pushable carts standing in the doorway of Gabi’s room. I felt like I was on the set of ER. The craziest part of listening to them all was that I actually understood some of what they were talking about.

They are still tweeking meds. Taking some meds away and adding new ones, all pretty standard. She has significant drainage from her open chest, so they will continue to give her the volume. It is called albumin and basically it is a protein solution that stays within her vascular system. If they just gave her regular IV or saline solution, most of that would leak out into her body and then she would become more swollen. This albumin stays within her arteries and veins to mix with her blood. They may try adding FFP (fresh frozen plasma) to her blood but so far she doesn’t need that.

They will begin weaning her off the ventilator, although they are still looking at about 2 weeks to stay on the breathing tube. They are taking her off the vecurim (sp?) which is the paralyzing meds, so hopefully by later today or tonight, she will start to flinch her toes and possbly open her eyes again. Amazing. Of course, the sedatives are still so strong, she won’t feel the pain.

I loved on rounds, one of the most amazing docs here, Dr. Nancy Ghanayem asked one of the med students, “What is the most significant change in Gabi that you know she is recovering?” I just loved that question. The poor med student was sweating as he was trying to come up with the answer. It was something about the UVC lines. I didn’t even care what the answer was…the word RECOVERING was all I cared about. I got chills up my spine. 

The physical therapist (who if I forgot to tell you, Ethan, is our sandwich friend that we met when we were trying to find our way from the disgusting skyway deli). Funny story. Anyway, she is going to come and massage Gabi’s muscles and teach me some techniques to give her muscles a little movement. This will benefit her in many ways.

Still a long road ahead, but as they say here… baby steps. Gabi, through God’s amazing work,  is certainly teaching me a lesson in patience. The docs try one thing and I ask “now what?” and they respond…we wait. But, I am not good at waiting!! 

Thanks for your continued support through all of this. Many blessings to all of you.

Love,

Teri

Comments { 4 }

Difficult night

Her blood pressure dropped significantly in the middle of the night. They are not sure why but she is doing much better this morning. They tweeked her meds more and shifted her position several times. She is loosing a lot of fluid from the drainage tubes, so they think she may have been kind of “dried out”. That is not they term they used…it’s my interpretation. They are giving her lots of volume to sustain the arteries and veins at this point, but it seems to be fairly standard.

She is off the Norepinephrine completely and the Epinephrine is down to about half the dose, so her heart is kicking in like it should be…they are just watching that blood pressure like crazy. Head ultrasound indicated the bleeding has completely broken up and it is not a concern anymore.

She is staying strong. Thats my girl!!  I don’t want to miss rounds, so I will update again soon.

Love,
Teri

Comments { 1 }

Tweeking the meds

Today has been awesome! She is still off the ECMO…10+ hours and counting. It has been a real testing period for Gabrielle and she is holding strong!  That’s my brave girl!  She is like an angel laying that in her little hospital bassinet.  The first time I saw through the bandage in front of her heart a few days ago, the nurses covered up the open chest because it was too much to bear. But now, it is uncovered and I have no problem looking at that little heart beating away. It is a miracle!! 

Right now, the docs are tweeking all the meds to try and find what is “normal” for Gabi. Her blood pressure is a little low, but not alarmingly so. Her heart rate is high hanging right around 182, which is “as expected” given how hard her heart is working. She is on 2 heart medications that are helping her heart stay strong: Epinephrine and Norepinephrine. Basically, they are like adrenalyn (sp?). She is also on a calcium drip, furosemide and fentanyl and vecuronium are the sedation meds and chemically paraylzing her. They will start to reduce the paralyzation meds possibly sometime tonight or tomorrow am. They need to see her at an absoulte resting place so they can tweek everything and figure out what is normal for her.

Her heart is ejecting blood and the flow with the shunt is doing great. Dr. Tweddle (our amazing surgeon) loosened up the shunt a bit during the procedure this morning. He compared it to a long balloon that you can use to make animals, like wrapping a rubber band around one to tweek exactly the amount of flow you want going through. He was happy with what he saw after loosening that a bit. Like Ethan said, the bleeding in the brain( a complication of the ECMO) has diminished and it is no longer a risk.They will do more head ultrasounds through her soft spot through the next few days to ensure no blood or fluid returns.

The left lung continues to drain the fluid that built up. The drainage from the actual surgery is slowing down, so that is great. She is quite swollen, kind of looks like a football player right now, but that is normal and she will pee off all that excess fluid in the next few days.

The next steps are to make sure the heart is stable: blood pressure, rate…I forgot everythign else the nurse said. After that; the next step would be to get the swelling down and then they will discuss closing her chest. This will probably be in about 4-6 days, then they will take her off the ventilator (breathing tube) to let her lungs take over fully.

I hope my amateur medical explanations are accurate. I have learned so much, but then to have to re-explain things is questionable. But the nursese are so patient and the docs and the whole team sit with me and answer all of my millions of questions.

That’s it for now. She is doing awesome!!  Praise God, for she is our little miracle.

Love you all,

Teri

Comments { 12 }

Progress

Her heart is still pumping away. There was some fluid in her lung that they cleared during this morning’s exploration, and continue to drain. They think that might have contributed to her past troubles, and clearing it out should help things to continue to move in a positive direction. The radiologist is there to do a head scan, they see signs that the bleeding in the head has decreased, and are trying to confirm that. Things are really coming up Millhouse at this point, and we couldn’t be happier. If things continue in this direction I think we are 3 or 4 days away from closing her chest, which is our new milestone. Pretty crazy that such a thing as closing an infant’s chest is a celebration and not some horror movie. My father told me of a study where a person would wear glasses that would make everything appear upside down. It took less then 24 hours for the subject’s brain to turn the visual world right side up.

I think that is what God is doing for Teri and I. Giving us the ability to really see good where it is, beyond what we used to think of as normal.

UPDATE:

No more bleeding in the brain. Teri will meet with the Doctors soon to get a full rundown of  where things are going next, and see how all of the new developments shape the rest of the week.

Comments { 8 }

A good day: Off the ECMO

Teri arrived at Gabis’ room just as they were cleaning up. There was substantially more room since THE ECMO MACHINE ISN’T IN THERE!!!

Gabi’s heart is beating on it’s own and everything is looking pretty good. Teri just called me with quick update, and I wanted to get the word out as soon as possible. I will update this post with more details as I get them.

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Toes flinched

I talked with my mom who has been sitting with her all day. She actually got to see her toes flinch when the nurse tickled them.  The nurses were playing her lullabies in the background as the paralyzation wears off. I can’t wait to see her.

Everything else is holding strong.

My husband is the best, isn’t he?

Thank you all for your continued support. I finally got to read most of the comments from the past week and I promise to respiond to each one of you. We are truly blessed.

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Things learned from a 8 day old

It is interesting to see how much I have learned from Gabrielle in just a short time. When people go through rough times they say it was a gift, and I always thought it was kind of a cliche. Gabrielle has taught me to not be so jaded.

Leaving Teri at the hospital last week was one of the most painful things that I have ever done. Teri was in physical and emotional pain as I left her with only a sick child to think about. It took me a while to get out of the parking garage, and more than once I almost turned around on the expressway. As I kept driving I realized all of the distractions of the world fell away. The personal baggage, the kids, all the physical odds and ends really faded back, and all that is left is how I really feel about my wife. I realized on that long ride back from Wisconsin what it really feels like to love your wife. So much that you will leave her alone and know you will all make it. It is not something I had ever felt before, it was something I had known about, but to feel it that deeply was a new gift.

As I made grilled cheese sandwiches (with jelly on top thanks to a stay with Grandma Colleen) I looked at the children sitting eagerly at the table. I was now truly grateful for the 3 healthy kids I have already been blessed with. I remember when I used to ride/race bikes and would sometimes have a bad crash. The shower afterwords was always pretty painful, and I would think to myself that I took yesterday’s pain-free shower for granted. A few days later things would heal/scab over and soap wasn’t as fearful, and I would really enjoy showers again for a while. God has given me a spiritual crash in baby Gabrielle, and as God heals her He also heals me.

That is Gabrielle’s gift to me, and I can’t wait to thank her.

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Quick Update

I just talked with one of Gabi’s nurses. She is holding steady still. They took her off the paralyzing medicine and she actually opened her eyes. The medication was supposed to take 24 hours to wear off, but she opened her eyes within 10 hours. I knew she was fiesty when she ripped out her O2 tubes several times, so I know she is fighting this.  The nurse said she has some bleeding in her head (a side effect from the ECMO). They grade the bleeding on a scale from 1 to 4, 4 being the worst. She is holding steady at just 1, which is still good, they are just monitoring that like crazy. There are many neurologic tests they will do on her once that paralyzation starts to wear off. They look for muscles twitching, dilation of the pupils and I forgot the many others.

They tried turning the ECMO maching down to 400 (she has been at 500 since the surgery) and her heart did show some signs of ejecting the blood through her arteries and veins, which is a great sign. Tomorrow in the morning they are going to open her back up and turn the ECMO machine way down to 200, watch her heart actually start beating and possible turn the machines off if her heart responds well. That’s what we are obviously hoping for and if she doesn’t respond well, then that will be a different conversation.

I am heading up to Milwaukee probably tomorrow morning to be there after the surgical exporation is finished. This back and forth is going to be a rough go for the next few months. But we will all hang in there and survive this. Nice to catch up with some of you today.

Thanks for all the continued support. They are certainly carrying us all through this uncertain time. Our faith is strong and I love my husband more today than I ever have, so I know we will all be OK, whatever does happen.

Love,
Teri

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Holding Steady

Well we are home and I am just loving my kids right now. We picked them up from G & G Danstrom’s and they all gently tackled me.  It was awesome. G. Colleen looked pretty warn out. She kept them busy while we were gone. And she and G. Ruth got our carpets cleaned while we were out of the house for a few days. Shelly was here,  moved the furniture back in its place and did the rest of our laundry, and a neighbor brought us a dinner. Talk about wonderful friends and family!

I talked to one of Gabi’s nurses and she said there is not much going on. She is holding steady, they gave her more lasix to help her pee off some of the swelling from surgery. Her chest is still open until the swelling goes down. It is bandaged up with clear tape so you can actually see her heart through the opening that is about the size of a small apple. They do a head ultrasound every few hours to ensure there is no bleeding or seizures or strokes. She is still fully sedated and chemically paralyzed so hopefully she doesn’t know we are not physically there with her right now. But I know her guardian angel is watching over her and that everyone’s prayers are carrying her through this.

I am so blown away by all of the comments and voicemails and emails I have received in the past few days. Thank you all for your continued support. I promise to get back to each one of you soon. We are truly blessed to have friends and family to support us like this.

We have already met some truly wonderful friends through this rollercoaster. A young couple was just going home with their son after an almost 3 month hospital stay. Another family next door to us in the hospital has a daughter that was born in May that has been on and off ECMO and had another surgery today. Both of their children have HLHS. I am certain we will keep in touch with them. Life here as we know it is so fragile and we have already learned so much this past week and I know Gabi has more lessons for us in the near future.

We have more pictures although they are a bit graphic. Ethan will post them tomorrow.

Love,Teri

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Tuesday update

She is still on ECMO. We just talked to the doctors and they are just letting her rest today and probably tomorrow. The machines she is attached to are just unbelievably overwhelming. She has 2 nurses that constantly at her side checking and rechecking and even putting chap stick on her little lips. As she lays there and appears lifeless, we know she is still fighting.

The doc checked the elecrticity and flow of her heart and all looks good, it is just the muscle that needs to rest. They are hoping that Gabi will give them a sign when to take her off the ECMO. They watch the arterial lines monitor for any signs of more pressure in the arteries, which means her heart could be ready to take over on its own. If they don’t see that sign soon, they will try and turn the ECMO down to see if her heart will kick in on its own. This will happen in the next 2-3 days.  If her heart does not take over, they will continue to let her rest for a