We had a mixed day today. Will is at 4 lb 13 oz, still taking full feeds (40CC/3 hours) and has been on room air almost all day though still through the canula. He should hopefully be getting the canula removed soon. He has had increased apnea today and had several bradys which is a slight concern. He has been nippling about half of his feedings - the nurse has been trying to alternate, giving him one by tube and then the next one by bottle so he doesn't get too tired. She did a dumb thing this afternoon though and gave him a bottle late for his 11AM feeding even though she knew perfectly well that I come in at 2 for breastfeeding which is clearly labeled in his chart and on a sign on his bed, and she was his nurse yesterday so she knew.. but she decided since he was awake to give him that bottle anyway and he was too tired to nurse at 2. So I'm a bit annoyed about that, it's not like I can be there 24/7 as much as I'd like to so that's my shot. He flat out refused, squeezed his mouth shut and wouldn't open his eyes.
He had an eye exam this afternoon too, a re-check for ROP which is a common problem for preemies. He has a level 1 ROP which means there is an overgrowth of blood vessels and/or scar tissue on the retina, not a serious level but still a concerning problem. The doctor said in most cases it just goes away completely on it's own but sometimes gets worse and then gets better or sometimes requires treatment. Untreated if it gets worse it could cause vision loss. The eye exam required those drops which make your eyes dilate and he did NOT want to open his eyes for them. The nurse was pretty rough getting them in there after he dodged about the 5th time and his poor eyes were red for a couple hours - he bruises easily, hopefully she didn't give him a black eye! I told her if it didn't work that time that was enough and it worked.
Will did better on the 5 PM feed, since he refused nursing at 2 I tried at 5 instead. He is having more problems latching since they've been pusing the pacifier and giving him bottles with increasing frequency, the last couple days he's not latching on nearly as well as he was. He was definitely interested but had trouble. When he did latch he tried hard to nurse but I don't think he got much of anything, the nurse pulled back on the feeding tube with a syringe (the way they check for residual) after we were done and only got a few drops - but maybe the milk got absorbed fast or something. He's still learning to suck effectively and tries with his tongue too far forward often. I told the nurse about his latching difficulties and she told me they could do all his feedings by tube but it would set his coming home date back, probably by weeks. So it's a tough call, I'll have to think about it. Long term it's very important that he NOT be getting bottles, I do not want him getting in the habit of taking alot of his feedings by bottle since I'm sure it will jeopardize our ability to learn to nurse effectively no matter what the staff says that's what the research says and I've seen that happen myself at work - breastfed babies given bottles figure out that's easier and refuse to nurse. I don't want him staying in the hospital any longer than is really necessary though. I think the best case scenario would be him coming home once his breathing is taken care of, I'm confident I could handle tube feeding and work on nursing much better at home! After all the medical junk I've been through, I'm very confident in my ability to learn to do anything he needs me to do for him to come home. The doc told me before though that he'll need to be nippling all feedings, but I know for a fact that other babies in the same NICU have gone home with a feeding tube in the time we've been there so I think I'm going to start talking to the doctors about that and make sure they understand that staying an extra month for a minor improvement is not an acceptable plan to me when I'm willing and able to handle extra care. Okay that's my rant for the day, sorry if it's rambling and incoherent! I'm tired and cranky again, I'm getting near the limit of how much I can standand I just want him to come home now. It's been so close I can see the light at the end of the tunnel, he went about 2 days with no major apnea episodes and today he started up again so the timer started over :(
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