In the last month, C has started really fighting against eating. A couple of weeks ago on Friday, my mother cuddled C until he went to sleep and then handed said OOPS! and him off to me to feed him. I couldn’t get him to wake up and I was joking around and said my husband would pop the bottle in his mouth anyway… I illustrated by popping the bottle in his mouth and to my amazement he drank. We spent all weekend feeding him in his sleep and he doubled-tripled the amount he ate! We were very excited and we made our goal feeding all weekend long. On Monday we had an appointment with GI and she thought we’d figured out a pretty slick solution. She did find it very interesting that he quits eating at around 30 ml awake, but asleep we can easily feed 85-90 ml. She had no problem with the solution, gave us some adjusted meds for reflux and sent us on our way. Then on Thursday our home health nurse found out about it, said absolutely not and called the cardiac nurse practitioner. I explained that without the sleep method, C would only eat about an ounce before he started really fighting and feedings could take in excess of an hour and a half…. They said well maybe we need an NG tube then. I REALLY want to avoid that and everyone knows it… but I said whatever we need to keep C healthy. They called the on call cardiologist (thankfully it was Dr. Rajan who we had met before) and he said he’d bring us in for an evaluation.
After we got in, it was time to feed C, so we started feeding him, and forced him to stay awake through the process. Feeding him like this is kind of like going to war and kind of like making Foie Gras. Eventually he started screaming and fighting and gagging. I called the nurse in to see what I was experiencing and she agreed it appeared he was in pain. My husband went home and I asked the nurses to take the night feedings so all I had to do overnight was pump. In the morning they said they were unable to wake him for his overnight feedings, but were able to get him to eat while he was mostly asleep and it seemed to work very well… I was like “I know! That’s the point!!! So we went back to feeding him in his sleep. The cardiologists on the floor said they felt he couldn’t really be asleep if he was eating and they were also fine with the feeding solution we’d come up with.
The resident on the floor explained to me that as medical people they heard eating in his sleep and were afraid he wouldn’t protect his airway. I didn’t say it, but I thought perhaps they meant inexperienced medical people… because the attendings all seemed very clear that eating in his sleep was cool. However, from now on, just in case, I’ll be saying eating in a state that is so near to sleep it is indiscernible but still allows him to adequately protect his airway and coordinate his suck/swallow/breathe reflex. While a much longer phrase than in his sleep… it will hopefully prevent a return visit to the hospital.
Our non-fortified goal is 650 mL/day. I don’t think we actually need to eat 650 to gain however. We quit fortifying after this last trip to the hospital. Someone on one of the boards had talked about how their LO would throw up when drinking fortified breast milk. They later tested her breast milk unfortified and found it was 27 kCal without any fortification. I suspect my milk is also at least somewhat higher than the average 20. We weren’t making goal, but we were still gaining around 25 grams a day. So I quit fortifying… we still gain around 25 grams a day, C eats around 90 mL per feeding and he hasn’t thrown up in 2 days now (knock on wood). We’ll see how his weight gain looks at cardiology on Tuesday. Hopefully, we’ll be able to stick with just breast milk for a while longer. C's much more comfortable without the fortification and he’s able to poop much easier! (Its amazing how much of baby life revolves around the ability to poop). We no longer have the problems where he screams like he’s in pain. I think the fortified milk was just too rich. Hopefully we will continue to gain and won’t have to go back there. We did create something of an oral aversion through all this. It seems to be getting better as we continue to not fortify, so hopefully we can resolve this one and not gain another after surgery.
My fingers are crossed.