She has gone up and down on her feeds this week but fortunately not stopped. She had a bit of increased output from her ostomy bag which pulled us back a few steps. She went from 8cc per hour to 4cc and then increased to 5cc yesterday. She will probably go up another cc today seeing that her output yesterday was within range. On two occasions this past week she has attempted to take a bottle and failed each time. She starts to gag and then her oxygen saturation drops. I think every four or five days we will attempt to give a bottle feed and see if she can learn how to do it. I am sure that with time she will get.
She also had an eye exam yesterday and the doctor says it seems like things are getting a little worse. There is increased traction on the peripheral of the retina. Friday a retina specialist will be in to take a look also and decided if it's time to intervene and perform retina surgery to save her vision.
Overall she is behaving like a normal baby. She hates diaper changes, baths and ostomy bag changes. She also likes to sleep most of the day with awake periods scattered in between. She loves her pacifier and gets very angry if you take it from her. She has been lifting her head up off my chest occasionally while I hold her. She still likes to pull her cannula and feeding tubes out (even if you wrap her hands up she finds a way to get at them). The hardest part is seeing her doing so well and not being able to take her home. She has improved so much in the last few months and even more so in the last few weeks. I was hoping to have her home for Christmas but that is now out of the picture and I am hoping at least before my birthday (Feb. 5th). I am really happy that she is doing well regardless of when she gets to come home and experience life outside of the hospital.