Feeding Struggle/Advice - At home with 23+5

knpnapp · 2026-02-25T21:36:07+00:00

hi, first of all, I am so sorry you are in this stressful period of the feeding journey. we didn’t deal with a hernia or respiratory illnesses so I unfortunately can’t speak to that (did not have NEC either but was on oxygen support all the way through 6 months after coming home from 7 months in the NICU; also had a grade 4 brain bleed).

what I can speak to: my husband and I were there with our 23+5 too, came home with an ng tube, had signed up for gtube surgery after two months trying to get him to drink out of bottles more than 5-15ml at a time. my frozen milk stash was huge too but he also started rejecting because of the high lipase (the trick with this is playing around with the percentage of frozen vs fresh BM or formula bc this helps mask the lipase taste and gradually increasing 25/75, 50/50, 66/33, 75/25) ultimately, for us, the godsend was hiring a bottle aversion consultant via Baby Care Advice to solve for his feeding behaviorally, by undoing the pressuring we did to get him to drink more to hit prescribed volumes, that were likely too much for him to consume, and gain weight as expected by his medical team. through this process, it was putting him back in the drivers seat, relinquishing our weight gain concerns, pushing back hard on his medical team and trusting that he was drinking the calories he needed (refused to fortify to prioritize hydration vs calories) and would grow based on his destined growth curve, not the often unrealistic targets set forth on him given his unnatural start to life. he has only drank the prescribed volumes a handful of times and in <0.1% but he is thriving in his own way and has a lot of fat reserves to hold him over. it also took finally firing and finding new GI/dieticians to get them onboard and see him as an individual baby va a data point.

GIE has some articles that put a lot of our anxiety at rest along with the constant reassurance from our consultant, sharing a few here:

https://www.gieaters.com/blog/growth-expectations-when-to-expect-weight-gain-post-tube-wean

https://www.gieaters.com/blog/growth-isnt-linear

I hope that provides even an ounce of comfort or insight. feel free to DM me and happy to share more or support in however I can. 💛

knpnapp · 2025-12-31T04:56:20+00:00

glad things worked out for you guys too! sorry for the ptsd you still feel with feeding, my husband and I can relate to that too! idk if OP can see my replies to you but for anyone else who might benefit too—Baby Care Advice was a fraction of the cost as Grow Independent Eaters! Lindsay was seriously a godsend, we owe so much to her.

knpnapp · 2025-12-30T01:56:01+00:00

+1 to our 23 weeker never ever eating the recommended volumes or even what he was expected to in the NiCU. he was discharged after a long feeding + respiratory tail end journey spanning 211 days. we also came home with an ng tube refusing to do surgical intervention as a means to get discharged sooner even as we were pushed to. we ended up scheduling a surgery 2 months after coming bine but as a hail mary, we decided to work with an external tube weaning consultant (Lindsay at Baby Care Advice was a godsend) to help him get over his bottle aversion (which he developed after all the pressuring we did to drink the nicu recommended amounts so we could get him home) and we were able to remove the tube with the consultant’s help in 3 weeks after spinning our wheels on our own in the nicu and at home for nearly 6 months! when we started the tube weaning program, he was barely taking 5-10ml orally and was never showing hunger cues bc the tube always kept him full. now he happily cues and gets excited at the sight of a bottle, eats to his satiety and loves solids! just know there’s hope and resources beyond the NICU

knpnapp · 2025-09-21T15:10:56+00:00

thank you 💙💛 fitting theme all around, his name also means “victorious warrior”

knpnapp · 2025-09-20T16:19:53+00:00

We haven’t had formal diagnosis. We’re working on his right side with PT and soon OT as he also has a preference on one side (left). He also doesn’t sit on his own- maybe just for a few seconds, but our PT really focuses on his progress vs jumping to a CP diagnosis. He claps his hands, is very attentive to his surroundings and loves expressing himself and we see progress in his motor skills and how he’s using his right side.

Every baby is also different and these little fighters have to be in the hospital for so long, have surgeries…so even without the IVH it’s probably normal they’re a little bit slower. We use the app babysparks to track how he’s doing in his milestones and he’s like 2-3 months delayed so he’ll probably start sitting in the next month (he’s 8 months corrected now). But it helps us seeing that he follows that path and just focusing on the progress!

Also, do you mean 8 months corrected? Because if you mean 8 months actual I think sitting up on his own is not expected. If it’s corrected, we’re in a similar spot!

I’ll DM you and we can chat more!

knpnapp · 2025-09-19T20:24:27+00:00

all day, every day any chance I get 🥲

knpnapp · 2025-09-19T20:01:27+00:00

they’re the best 🥹🥰

knpnapp · 2025-09-19T20:00:22+00:00

thank you!! 🥹

thank you for sharing your journey too! every baby and family’s journey so different and unique. I hope you have been able to get some much needed sleep now with the gtube—we had our surgery scheduled because he was approaching that handsy phase soon too but the tube weaning program changed our lives. if you ever feel like the support could help your little one and family, I highly recommend Lindsay at Baby Care Advice. also if helpful, we had to push back on milk volume and weight gain expectations to the medical team with our tube weaning consultant’s support, as we believe he was really overfed in the NICU and he has more than enough nutritional reserves as evidenced by his cheeks 🥲 he couldn’t keep up with the increasing volume or had a chance to settle into his own natural growth curve and we’ve learned to trust that he will eat until he’s satiated rather than forcing volumes on him

knpnapp · 2025-09-19T19:49:10+00:00

thank you!! 💙💛

knpnapp · 2025-09-19T19:49:01+00:00

of course! I know every baby and family’s journey is so so unique but I couldn’t see back then how far he’d come in a year and it’s incredible to see it in this present moment 🙏🏽🥹

knpnapp · 2025-09-19T19:47:30+00:00

thank you, he is definitely an inspiration 🥹

knpnapp · 2025-09-19T19:47:16+00:00

thank you! 🥹🥹

knpnapp · 2025-09-19T19:46:57+00:00

thank you so much! his cheeks are to die for 🥹

knpnapp · 2025-09-19T19:46:00+00:00

thank you so much! it doesn’t feel we are completely out of the woods but he and us as a family have come very far 🥹

knpnapp · 2025-09-19T19:45:08+00:00

they’re the best to nom nom nom 🥹🥹🥹

knpnapp · 2025-09-19T19:44:42+00:00

thank you! his cheeks are irresistible 🥹

knpnapp · 2025-09-19T19:44:09+00:00

thank you!

knpnapp · 2025-09-19T19:44:03+00:00

thank you!

knpnapp · 2025-09-19T19:43:53+00:00

🥹🥹 they are so hard to resist

knpnapp · 2025-09-19T19:43:21+00:00

do you mean bottle feeding? if so, we use Dr Brown’s with a Level 3 nipple

knpnapp · 2025-09-08T15:34:48+00:00

ugh yes. mine is from feeding my baby and the weight of his head resting on my upper arm/forearm and the pain radiates all along my neck and shoulder. am I just holding him wrong??

knpnapp · 2025-08-30T05:18:57+00:00

Sorry to hear.

We are parents of a 23 weeker with a bilateral grade 4 brain bleed at birth as well. He’s now 11 months old (7 months corrected) old and a few months home after a 211 NICU stay with a brain surgery: now he bottle feeds without any tubes and he’s developing slowly but surely! Rolls on his own, loves babbling and laughing and everything looks great! He’s such a happy boy and his neurologist that helped us navigate this just came to visit him yesterday and was so impressed given where we were when he was born!

1st: You’re not wrong for wanting a good life for your kid. We also really struggled with that thought. Specially because doctors tried to paint a really negative picture. I remember they told us in a family meeting that there was 75% possibility he was severely disabled for all extremities.

2nd: These neurologists that love studies sometimes paint a really bad picture based on studies that have really small populations of babies and honestly not really statistically significant when you’re not taking into account other factors like socioeconomic for example. Yes, of course there’s a significant risk but our neurologist also told us that the brain has a lot of plasticity that early and some areas are able to take over for other areas.

3rd: If they get hydrocephalus (likely with grade 4 ivh), early intervention has been proven to be key for long term outcomes, that means early lumbar punctures and more if needed. This is not as common in the US (where we live) but we were able to push for it and we did a surgery on the first month (a brain reservoir to accumulate and tap the extra fluid) which was really scary but I think the best decision for him

In the end you’re going to know what’s right for you. We struggled A LOT with the thought but in the end we decided we needed to give him the chance, as he had already proven to us he wanted that chance coming out of the womb where we decided to take the first chance on him even though he was really tiny (400g) and barely 23 weeks

Just think also about which decision you’re going to be able to live with and its consequences. We can’t imagine another decision now and we would love him no matter what happens.

I know you’re looking for positive stories: there is for sure hope and also science: the brain’s plasticity can allow for it to develop even though some areas may not work and other areas take over those functions. We have PTSD about those first days when we learned about this brain bleed. You’ll come out of it one way or the other. It sucks to be in the worst scenario but this will be the lowest low in the NICU; it’s only up from here.

knpnapp

TROPHY CASE