tuesday 6/25/2013

Nothing new, really. She is still on half feeds- working her way up to the full 63mLs. They decided today to fortify the breast milk again with a high calorie supplement, and it frustrates me that this wasn't done automatically when the feeds were restarted since this is what she has had for many many weeks before that 4th dialaton. So she is still getting the TPN IV nutrition in addition to the breastmilk through the NG tube. Ava is on 5L flow and room air oxygen by high flow nasal cannula. Again, she needs to get down to 2 before she can eat. The nurse today had never had her before and wasn't intent on changing anything, so I didn't push it, though I thought they should be working toward 4L today since she's had 5L for over 24 hours now. This nurse also observed her twitching that looks like seizures (old news) and the nurse practitioner...who also had never had her, called neurology and got an order for phenobarbitol. She called to tell me and I sort of ranted on the phone. We've tried phenobarbitol 2 other times and clonadine once and I was not going to start phenobarbitol a 3rd time before fully investigating the issue. So I pulled out the "parent card" and refused the phenobarbitol, which I am sure they aren't used to except by annoying nurse mommies. So, by the time I had gotten in to the NICU today, the NP had talked to an attending doctor who had Ava before and the issue of phenobarbitol was dropped. These are the little things I am thankful to be able to do since I understand the medical "stuff" and have been present on a day to day basis for Ava which really does make a difference. Most out-of-town parents are not able to do this...which is why you don't see many parents in the NICU every day, especially on weekdays. Our friends and family have made this possible for us, so thank you!