I have not seen this family yet, but here are their concerns. They didn’t specify the babies’ current age but I’m guessing a couple of weeks out from being discharged at 44 weeks so their corrected age would only be about 6 weeks. Would love any guidance in how to best support this family!
“Twins born 25w, used to take 100ml per feed in NICU when they were 36weeks – 44weeks. Their feed has been declining since discharge at 44 weeks. Recently 30-70ml per feed, only hitting 50-70% of daily total volume goal. Both would get fussy/mad often during feed and fall asleep a lot. We have already changed the formula a couple times as suggested by our pediatrician, but they don’t seem to behave too differently. We use fortified breast milk 24 calories per oz with the formula. Started with Neosure (used in the NICU), tried Enfacare for a few days, and changed to Nutramigen for the last two weeks.”
We don’t know much about history but hearing that they are former 25 weekers suggests strongly to me that there is a high risk for respiratory sequelae, which may be why they are disengaging during feeding; it is likely purposeful and adaptive behavior. There may be GI issues that could be related to many possibilities—such as gulping leading to air ingestion, tethered oral tissues that create air ingestion with each suck – both possibilities could provoke GI discomfort. Parents may have increased the nipple flow rate since being home (to increase intake) which may be actually reducing their available breaths and leading to depletion of reserves and making intake worse. It’s all about the aerobic demands of feeding and the co-morbidities that underpin function. And it is also possible the intake noted in NICU was due to well-intentioned volume-driven feeding, sadly, and maybe now parents – hopefully- aren’t “pushing them”. When you evaluate the infants, be watchful for infant communication (physiologic and behavioral stress signs), how parents feed (flow rate, position, consideration of state, their response, or lack of response to infant disengagement, how developmentally supportive the feeding experience is – or is it volume-driven, what they describe would be a “good feeding” (i.e., bottle empty, awake at the end, stays awake, seems to like it). May experience tells me that volume-driven feeding combined with respiratory fatigue may be what’s going on. Parents will then need gentle (and the “whys” behind your suggestions) to unwind that volume-driven approach and move to infant-guided feeding (more manageable/slower flowrate, swaddled elevated sidelying, contingent resting, contingent co-regulated pacing). Close contact with the pediatrician will be essential. Re-admissions due to FTT post NICU discharge are high in this group, who often present as fragile feeders in the NICU and after discharge too. There is also a high risk for silent and symptomatic aspiration in this group, which may also be a part of the bigger picture adversely affecting feeding.