After multiple stomach surgeries, Andrew was discharged from the NICU hailed as a miraculously good eater. Andrew loved to eat. He knew he had been missing out. But then he came home and his eating started to change for the worst:
(1) Spitting up the entire bottle every other feeding.
(2) Feeding only 1-2 ounces at a time instead of 4 oz at once (thus feeding all day and night long).
(3) High-pitched screams of pain before, during, and after feeds and burps. Yes, all day and night.
(4) Andrew figured out that eating was the source of his distress, so he developed an oral aversion/sensitivity and would fight every feed. A mere touch to his lips would result in more high-pitch screeching.
Working closely with Andrew’s gastroenterologist, the feeding situation has improved, somewhat, in the following ways:
(1) Turns out, Andrew has developed a milk protein allergy. He was originally drinking breast milk that was supplemented with Neosure preemie infant formula. We took him off both (as they are dairy-based) and started him on Elacare (hypoallergenic, pre-digested, and soy-based). Almost immediately, the spit-ups and bloody stool stopped.
(2) Andrew also developed reflux, which would explain why he would screech inconsolably after each feeding and burp. We took him off of Zantac (totally useless in our situation) and put him on 7.5mg/day of Prevacid. The screeching stopped! It doesn’t mean he cries any less, but at least his cries sound more like a normal baby instead of that of a dying hyena. The Prevacid only seems to help Andrew about 8-12 hours or so, unfortunately. However, our GI doctor is reluctant to increase the dosage because I guess Andrew is at the maximum for his size.
(3) Still at our wit’s end because of Andrew’s endless crying, we also considered the possibility of gas and constipation. At the recommendation of the GI doctor, we were given the go-ahead to give Andrew up to four pediatric glycerin suppositories per day. Depending on the level of his angst, we’ve been giving Andrew 1-2 suppositories per day. This has helped. Sort of.
He is not quite drinking 4 ounces at once like he used to do in the NICU. But he can now tolerate up to 2-3 ounces at a time.
Andrew still cries a whole lot. At this point, we are starting to believe that the crying persists because of sensory (possibly neurological?) issues.
But the important thing–and we don’t take this for granted–is that he is eating and growing.