after a long day of continuing to put the puzzling puzzle pieces together, he seems to be slowly getting better after the surgery. he’s stopped puking and is taking his bottles a bit better, although he’s “refluxing” his food more than we’re comfortable with, which means that it might be getting close to deciding to put him on drugs to control the condition which can have nasty side effects.
it’s a difficult decision, but each time he refluxes, he’s at risk for dumping milk into his lungs which can lead to pneumonia. and that’s really the last thing we need right now. he’s also in obvious discomfort and not really sleeping after his feedings. whereas in the past he might reflux a little bit of food out his nose and mouth, we now have to be at his bed constantly at the ready with a burp cloth because at any moment he could be laying in a pool of milk. obviously this is not doing our sleep schedule any favors.
we talked with our nurse tonight who has “parent” nicu experience, as she has a child with a terminal form of dwarfism who isn’t expected to live much longer; she was very sympathetic and has given us the most helpful advice that we’ve heard all day long. every baby will recover from surgery in their own way and since he hasn’t had surgery, we can’t expect to know how he’s going to recover, even if he’s done so well in so many different areas. she said that her own daughter took a month took a month to recover from the supposedly routine ROP surgery. she very much knows the risks associated with reglan because her daughter is taking it and she’s administered it as a nurse for years. but at a certain point, the risks of reflux outweight those of the treatment. such are the decisions that you have to make as a micropreemie parent – allow your child to remain at risk for getting pneumonia ( and worse ) or put him on meds that could affect his nervous system. difficult decision, no?
i should probably say that we talked with the doctors at both our new and old nicus and none of them preferred any of the common alternatives to reglan and zantac for a variety of reasons, some of which seemed reasonable and some of which just seemed lazy.
so after two days of trying every positioning trick in the book, the nurse said she was going to try a few more ideas ( including putting the milk in cereal ) to control the reflux; as we left, sleepy and frustrated, i gave her permission to start the drugs in the morning if nothing else was working.