In the words of one of Grace's surgeons, "she is a rockstar"!!!!!!! She is doing so well! Yesterday Dr Molitor was going to remove Grace's cannulas, so they sent us all out of the room around 2. We came back about an hour later when they said they would be done and peeked through the window and none of the nurses had caps and masks on so we asked to go in and they let us. Well upon walking up to Grace's bedside we saw there were still cannulas in her neck. He said that they were probably being too cautious and they probably could have taken them out and all would have been ok but htye didnt want to because she had had a blood gas right before that they didn't like and they spent the last hour deciding what to do. So they decided to wait until today and they would do it. Ok we thought, better safe than sorry. Then 10 minutes later after consulting with another Dr, they decided to take them out!! It took awhile but they came out and she didnt loose any more blood than they were expecting and she tolerated it with alot of sedation! She has been pretty heavily sedated since then because they want her to rest and basically unless they paralyze her, that girl isnt resting. She really starts to act up! She is on the high frequency vent still and they are hoping to switch to a conventional vent on Monday. She is still on the Nitric and they had started to wean it down but then she had a blood gas that was a little off what they wanted so they stopped. They have been able to wean down her vent settings already as well. She is doing such a great job! I am continnually amazed through this the difference a day or even a few hours can make each way. We spent Thursday just a mess because of the talk that morning and Friday just proved wonderful.
The next steps are to come off the high frequency vent to conventional and getting those intestines back in. they will work on that next week. Hopefully those chest tubes come out soon too. As soon as those are out, she is all mine to hold!
Her kidneys seem to be doing well, they do not have any indication that she will need to be put on dialysis. Neuro came and talked with us about the findings on her brain, but we still wont know anything until she is totally off the vent. When they extubate is when they schedule the MRI, so we have a ways to go. But the Neurologist said that the part of the brain the ischemia is on, affects motor development, and asked how Grace is when she is not paralyzed. Grace will throw a fit like a "normal" (I hate using that word, I hate when she's talked about it's "CDH babies") newborn. She balls up her fists and swings her arms around and picks up her legs and kicks around. She moves her head from side to side when she is screaming (silently) too. EVen with ECMO cannulas in her neck she was moving her head. So because she does all that, and her eyes reacted to the light she is not really thinkkng that her motor development should be impacted at this point!
Lots of good news the last few days, keep praying! This little girl is such a fighter, such an amazing little lady.