Update from the Hospital

Today is our fourth day in the hospital and it sounds like we will be here at least two more days, we are just waiting for something to work feeding-wise so that Claire will start to gain weight.

Claire is working so hard just to breathe that she is constantly sweating, she even wakes up in a puddle of sweat, so we are really struggling to get weight on her.  We are fortifying her breast milk as much as her body can handle and feeding her all through the day and night and she is still not gaining even close to what they would like to see her gain each day. Her liver is swollen now as well which is a sign that her heart failure is progressing despite all of her medications. They have decided that she can't wait any longer and have decided to schedule her open heart surgery.  Her cardiologist feels like a significant amount of blood is passing through the hole and is concerned at how quickly the pressure on the right side of her heart is increasing. It will most likely take place on Monday, October 6th, someone is coming to talk to us tomorrow and get us all set up with what we need in order to prepare for surgery.

Our focus over the next ten days (EEEEK!) will be to get as much weight on her as we can, to try to clear up her lungs, and to keep her SUPER healthy so that she can have a successful surgery and recovery.  Every little tiny thing at this point could make a big difference in terms of the length of her recovery.

We are feeding her exclusively through the tube now for a few reasons; so that she isn't using up any of her precious calories for eating and so that we can protect her lungs. We are still trying to find something that will work for her reflux - she is on the maximum dose that they can give her and is still really struggling with it but because there is a big concern that she is aspirating it when it comes up, that's something else that they'd like to figure out before we go home.  Both her GI doc and her surgeon are in the hospital this weekend so we hope to collaborate with them to get this figured out soon so that we can spend a few precious days at home before her surgery.  They expect us to be in the hospital for a couple of weeks post-surgery.

Here are some pictures for you:

Our Skinny Miss Claire

Big Brother stopped by to say "hi!"

Nurse Amber got some Claire cuddles

This is how Claire eats lunch these days

And some encouragement for all of us ...

Have a great night friends <3.  I will update more when we know more!  Thank you for your continued prayer and support, I have loved reading all of your messages.