Friday, May 13, 2011

One step forward and two steps back.

It seems with CDH or at least with Grace each time we move forward we then move backward. It's sometimes frustrating and I have to constantly tell myself to look at how far she has come, a month ago she was still on ECMO and not doing so hot.
So I mentioned we started feeds earlier this week, for the first time ever. Grace had never ever had anything in her gut (well for the last week she had had viagra but never food) because her intestines had been in a silo for so long and they can't feed while they are out and then they needed to give her time to get used to them being inside but almost immediately she presented with the Chylothorax so feeds could never start. It was not a surprise to anyone that Grace did not tolerate her milk. I noticed almost immediately that feeding made her very fussy and wiggly, which was attributed to what a weird new feeling eating must be for her. So feeds continued and they even upped her to 2 cc per hour. The way they determine if she is digesting it is to pull some back from her feeding tube to see if it's just pooling at the bottom and hers was not so everyone thought things were great. Her tummy got very swollen and puffy and it looked on xray like it was just air so again the thought was that she had gas, rightly so since she wasn't used to using her stomach and intestines. Finally she just got so fussy and so upset, that her feeds were stopped another xray was taken and her feeding tube was taken out and a repogle was put back in. A repogle is a tube through her nose or mouth that sucks out what's in her stomach. Immediately after placing the repogle she was draining bile. She put out about 70 cc of bile. Turns out she was not digesting her milk and she had a major upset stomach. Her feeding tube was higher than it should have been so thats why they were not getting the residual out.
So feeds were stopped about 24 hours after they were started and they are thinking of starting again tomorrow. She started stooling again so that's good, since one thought was that she may have had a small bowel obstruction.
 The other step back was that her chest tube had stopped putting out, so they were talking about taking it out. Huge because then Daddy can finally hold his baby girl! Well of course then it started putting out a ton. But they say it is not Chyle and xray does not show it accumulating around her lung and it's not affecting her breathing at all and they think without the chest tube her body would just reabsorb it. But they are leaving the tube in place until she can start feeding again to ensure that the Chylothorax does not come back. Please pray it does not.
 Yesterday and today Grace was "sprinted" on the vent. What that means is that they basically turn it off to see what she will do. They leave the oxygen on but nothing else. I was not there for it yesterday but was told she did good but wore herself out. That was for half an hour. Today I was there when they sprinted and it was for close to an hour and she did so well. She never dropped her sats and her lung volumes were great and steady and she only rose her heartrate at the end and that ended up being becuase she needed a diaper change. She does not like having and wet/dirty diaper. So they are weaing her Nitric still and she's doing very well with that and they expect her to be off early next week and hoping to extubate by end of next week.
 Grace will be getting a MRI next week and for whatever reason it makes me nervous so pray that it goes well and the results show nothing abnormal. The MRI will be of her brain to see what the bleeds they saw on ultrasound due to ECMO mean. Pray she has no damage to her brain.
Grace has been spiking fevers and nobody can figure out why, they've cultured everything and nothing is growing so they don't think she has any infections but she is on antibiotics to be safe. Tylenol brings it down but then it comes back about 24 hours later. She has also had a few bright bright red rashes and they arent sure what that's about either. They don't know if they are related or not. Please pray those go away on thier own or that the surgeons can figure it out. She is, as one person said, a puzzle.
She is up to about 9 pounds, which is about the birth weight of all the boys. We knew before she was born that she wasn't going to be as big as them and always talked about how different a tiny baby would be to take care of, but I guess it didn't matter anyway. I hope she gets the chest tube out soon and maybe she can actually wear some of her 0-3 month clothes.
Grace is in the mood to be extubated, whenever her position allows she tries to grab her tube. She has had her fingers wrapped tightly around it a few times. In due time she will be free of it, I'll bet she can't wait. The fits this child throws are crazy though, she is on a LOT of sedation still but her body is apparently used to it, her arms and legs get going like crazy and she moves her head all around, I cant imagine what her fits will be like when she is not drugged at all! She is fiesty for sure but I can't wait for her to throw fits at home:)


  1. I'm so glad to hear you were able to hold her & give her a bath! I hope that she will be able to overcome these new obstacles quickly & easily. I'm always thinking and praying for you all & especially precious Grace. I pray the doctors will figure out the cause of her fever & I pray that she'll overcome her tummy issues so she can get that wonderful breastmilk! I hope Adam will be able to hold her soon too!

  2. long road....CDH stinks with the steps backward. Im sorry about all that, but am glad to hear some "better" things as well. hugs and prayers...