Archive | December, 2009

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

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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.

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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.

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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!!!

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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

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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.

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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!!!!

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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.

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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

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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

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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

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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

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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

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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

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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

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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!

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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 }