Feeding Struggle/Advice - At home with 23+5

This is a burner account, but we need advice please.

We have a 23+5 baby that spent 165 days in NICU. Discharged late January 2026, so one month at home.

No brain bleed, NEC, etc. so we were very blessed and have had a positive outcome so far, even though we were in the trenches for a long time. He did have very bad lungs out the gates and spent 67 days on ventilator.

He was finally taken off of oxygen support on day 142. At that time, they also took his NG tube out randomly as he decided to finally take his food by mouth. Bottles were a struggle before, so a Light bulb was turned on for him somehow.

Since this date, he has drifted down below 1% on preemie growth charts.

We have a really bad hernia that will be repaired in March which causes clear discomfort. The largest the NICU nurses ever saw. They are also debating feeding tube at this time due to weight…

He is a happy baby overall, hitting PT milestones right now, but we can’t get him to eat the amount dietician wants. He did get RSV shortly after release from our toddler (no way that we could have prevented), so that was also a set back on weight gain and hernia surgery.

He is on breastmilk with neosure for extra cals (sometimes 26 cal if he can take it, other times 24 or just straight breast milk). Gets on average under 500 ml a day with a couple of breastfeeds. We have frozen breast milk for MONTHS that is now high lipase, so he is partially refusing that too... which is horrible feeling for my wife who spent so long pumping during NICU.

We have tried the alcohol-free vanilla for the lipase taste and he spat up. We are working with dietician to potentially switch to Enfacare or Kendamil later, but he needs the extra calcium at this time.

We just can’t figure out his ability to gain consistent weight. It is maddening and I feel like a mad scientist concocting theories and different mixes of old vs. fresh breastmilk, neosure weights, etc.

Each feed is a stressful time for us and it’s our new obsession.

Any stories out there to assist?

At the end of the day, we want him to thrive, so gtube is not end of the world for us. but we wonder if it’s just the hernia causing gas and discomfort to not want to eat. Or what are we doing wrong or if he just is going at his own pace.

Thank you 🙏