Archive | April, 2013

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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