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