Peyton on the other hand will not be home for Thanksgiving like I had hoped. At this point I am not even counting on her being home for Christmas. She was doing so good as they were increasing her feeds, but once they got to the goal amount her body started stooling it out not absorbing it. She has two HUGE hurdles in her way though…She has “short gut” from having 80cm of her intestine cut out, this is a huge issue in itself. Most babies with ONLY the short gut issue have a really hard time absorbing food. She has this to contend with along with the CF malabsorption issues on top of it. Luckily her body should over come all of her “short gut” issues and obstacles within the first year.
They also diagnosed her with a UTI last week, which she’s currently on iv antibiotics for. They are hoping that might have played a role into why her body wasn’t cooperating with her feeds.
Her feeds were stopped on Friday and are going to start again today….SO YES this weekend was awful with a starving miserable baby. Her nutrients are being given through her broviac which unfortunately doesn’t fill her stomach. They are starting her feeds at 5ml and hopefully will increase by 5ml’s every 12 hours until she gets to 25 depending on how her body cooperates.
As frustrating as this all is I have to remember how far she has come. I was having a conversation with one of the nurse practitioners the other day and she made it a point to tell me that when Peyton first got here they didn’t think she would make it. This hospital gets the sickest of the sick babies from all over the world and they didn’t think that MY BABY was going to live!! Not only is Peyton alive, she WILL BE FINE!! Yes it’s taking MUCH longer than I want it to, but reminding myself how far she has come and just the simple fact the she IS HERE is what is getting me through this…
Not only is she here…but look at her!!!!!
As you can see, Radek has been busy being a crazy rambunctious toddler….
that LOVES to play in the dirt!
He even made the transition last week from toddler bed to big boy bed!
This is Rad the the Please Touch Museum..One of our FAVORITE places to take him and it’s only a mile from the hospital!!!