QUESTION: I have two infants that I am currently treating who were both preemies one extremely premature and one late-preterm. However they are both showing similar s/s that seem to be cues of bigger issues that are not clear to anyone right now. Would love some open discussion and feedback.Both have had VFSS which showed some oral disorganization however pharyngeal stages looked decent organizing in valleculae at appropriate ages. Both babies have been worked up by pediatric GI with suspected milk allergy and are on Nutrimagen.
Taught families to read baby’s cues as first tasks in plan of care and addressed nipple flow rates. One baby with similac slow flow and other with haberman. Both babies take on average one ounce and stop which is a good feed. Some feeds all feed is gavaged due to crying and fussing to point of exhaustion.
Had parents swaddling babies for first several months and now older baby still likes swaddle at time and younger baby is in phase where as soon as mom swaddles she begins to fight and scream.
Both babies have had EGD with no remarkable findings other than which we already knew GERD/EER. Both babies on appropriate H-2 blocker for reflux.
I have had several colleagues comment that they have had similar cases in past and never felt they got anywhere and I just can’t except the we don’t know answer. These two girls cases will drive me crazy until we find the right combination for them as you would expect they both show significant aversions to each and every feed and parents report their best feeds are the “dream feeds”. I would love whatever input is out there to help me continue to piece these girls puzzles together. Thank you!!!
ANSWER: It sounds as though GER/EER may indeed be part of the picture. it is helpful that they did an EGD to ruleout Eosinophilic Esophagitis; not often done in NICUs. That at least tells us that positive intervention strategies due to GI issues will include: frequent burps, not allowing gulping, reducing air swallowing and smaller more frequent feedings, all of which will help these preterms.
The specifics of the post don’t mention GA or current PCA for either infant but we know one is extremely preterm (so I am thinking at or under 28 weeks GA) and one is a late preterm. We know from the literature that the extremely preterm infant is profiled as a high risk fragile feeder due to her co-morbidities, which include very likely respiratory co-morbidities. For her, that may be a bigger influencing factor than the EER. There is the potential for increased WOB and intermittent tachypnea at baseline , and then a subsequent increase in both due to the aerobic demands of feeding, with resulting respiratory fatigue. Her signs of disengagement (i.e., signalling she is done via not rooting or not continuing to suck) may indeed be driven by respiratory issues as much as the effects of EER. Your description of her recent feeding behaviors strongly suggests a primary respiratory issue adversely affecting feeding. I’d tend to stay away from thickening as it has its own adverse sequelae in neonates and stay with effective “co-regulated” external pacing combined with a slow controllable flow rate, sidelying and respect for infant’s signs of engagement and disengagement. Sounds like you are already doing that. Depending on her history, asking/expecting her to take all feeds PO may be beyond her capacity to do so. Caregivers who, with good intentions, “feed past her stop signs” with a focus on “volume-driven” versus “infant-guided” feeding experiences may indeed reinforce negative learning and wire those neural pathways which will ultimately move her “away from” the desire to feed.
The late preterm infant, surprisingly, is in a group, “late preterms”, who, according to the most recent literature, are more likely to be re-admitted for poor feeding than extremely preterm infants. That is because they too have the key co-morbidities, which often get less notice as they are perceived as “a little newborn” by some caregivers. These co-morbidities include respiratory, due to immature lungs and RDS (although more subtle than infants of younger GA)but still adversely affecting coordination and drive to feed. In addition, their other common co-morbitidites often include decreased postural control, hypoglycemia and jaundice, and reduced state regulation (all of which can reduce drive to feed and result in poor endurance and suboptimal intake). Re-alerting strategies are important for this group, as is controllable/slow flow and co-regulated external pacing in a swaddled sidelying positon.
The infant you mention below, whom you fed at 9-12-3 sounds as if she may be the former extremely preterm infant. Her adverse overt behavior of coughing, combined with uncoupling of breathing and swallowing (reflected in gulping, eyebrow raise, eyebrow furrowing and movement into extension) suggest the workload may be beyond her skill level and she may be becoming an unsafe feeder at times, despite having no bolus mis-direction during the VFSS. Look to see if feeders are truly offering co-regulated external pacing; her adverse behaviors you mention below suggest a need for better co-regulation, i.e., breaks could perhaps be offered more contingent on her signs of impending incoordination, to avert stress behaviors by facilitating a stable burst-pause pattern and better swallow-breathe synchrony.
Helping all caregivers recognize that we cannot push preterms beyond their capacity is critical. I think you are providing wonderful infant-guided support. Be careful to not get pulled into the “volume means success” mantra that for years was the guide in the NICU. Both infants, from the limited description, are preterms who may not be able to be full PO feeders in the near future, but they can be supported to have positive experiences no matter what amount they take.