Well Grace was doing very well and they were talking about starting to Trial her off the ECMO, starting Thursday. Well it turns out she's not having any title volumes in her lungs so she is not ready. She is not filling them on her own yet more or less I think is the general idea there. So they are waiting and letting her rest more. They will hopefully begin at the beginning of the week, but if she isnt filling them they will up her vent and try some other things. Pray that she begins to use them. Hopfully after some rest this weekend she can. She gets herself very worked up, coughing to try to get her tubes out and looking around and trying to act like a normal newborn. When people touch and talk to her too much she gets too excited and then has to be sedated again because she is just working too hard on getting out of here! We are going to reduce her stimulation and see if it helps.
Dr Molitor came in and talked with us yesterday about a concern of theirs and it was pretty upsetting. Grace has a cranial ultrasound done every other day to make sure she does not develop a brain bleed from the ECMO and all the blood thinners that she is on. She does not have a bleed but rather they have found a small area of her brain where she somehow did not recieve enough oxygen to. They don't really know at all what this means for her because ultrasound is not able to diagnose something like that, she will need an MRI, which she is not stable enough for. When she is off ECMO she will get one. Pray that it's small and on an area of the brain that is just not going to matter much. Her nurse made me feel alot better about it than I was at first. She said it wont set back when she goes home at all, it will just depend on how it affects her when she is there.
She told me as soon as Grace is off ECMO we can hold her, and if I want to sit and hold her 24/7 then I will sit and hold her 24/7. I can't wait. I want that sweet girl in my arms so much. She is so wonderful she likes to hold our hands and have them up by her face. She likes to suck a pacifier as best as she can too
Giving her my colostrum has stopped for the time being, since its so exciting for her. She really likes it alot htough so that makes me really happy and gives me hope for nursing her one day. Pray she does not become a poor feeder. (She's a Hall and a Fisher, she has to like to eat! ha!)
Pray for our boys to not be having too hard of a time without us. And pray for rest for Grace. She gets very annoyed by the sounds of the NICU. There are two babies by her that just cry ALOT. They can't help it, one is sick and one doesnt get alot of attention. BUT they agitate her, the door closing agitates her since she right by it.
Over all though her nurse Jennifer, who will be one of her constant care nurses says that she is doing nothing that they would NOT expect. She said so far she is going on a "normal" course for CDH.