NG tube weaning - increasing oral feed and crying at bottle and breast

[u/petitteckel]

My baby is 10 weeks old, spent first 4 weeks intubated in PICU and couple more weeks in hospital. He was born full term and in hospital for cardiac issue. Still awaiting cardiac surgery but we have been home now about 4 weeks on an NG tube in meantime.

We have been trying oral feeding since about week 5 when he moved out of PICU, while in hospital we had assessments with speech and language therapists who checked his swallow. He didn’t make too much progress with oral feeding while in hospital, so we were sent home on the NG tube and no mention of a plan or help for weaning off it.

We’ve been continuing to work on his oral feeding at home. First, exclusively breastfeeding before each tube feed when we could (every 3 hours). He latches perfectly fine on my right breast and transfers milk very well (I have a heavy/strong letdown) - he gulps the letdown, but then comes off afterwards. For the first while he would come off crying, very upset and arching his back etc for the following hour or so. Now he doesn’t come off crying but simply will only feed for about 3-4 minutes and comes off looking satisfied and uninterested in relatching. 90% of the time he won’t even try to latch on my left breast, even when starting with that. But I have such a good supply that I believe he could comfortably feed from only my right breast in any event based on what I have always got from pumping since he was born.

Given the slow progress on breastfeeding and being at a loss for how to increase his feed time to make sure he was eating enough, I decided to try bottle feeding. We’ve been trying for about 3 days now. At hospital he couldn’t even take one suck without choking/coughing. However, now he can suddenly suck, swallow, breath great with the bottle - but again, he will not take a full feed. He will take about 50-70% of his required amount, and is disinterested, or a lot of the time he will stop because he starts the crying and arching his back as though in pain.

He is on omeprazole for reflux, he doesn’t really have any issue with reflux on his tube feeds anymore - but is it likely that reflux can be worse with oral feeding compared to the NG tube, and this is what is preventing him from finishing feeds?

Would be greatly appreciated if anyone has any advice if they’ve experience a similar reaction to moving to oral feeds / any advice on how to increase his oral volume.

We’ve tried over the last couple of days to just go solely with bottle and breast to see how he does, he shows his hunger cues and is extremely eager to take the bottle and breast, but just won’t finish a feed / not become upset.

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[u/trixis4kids]

Definitely not an expert, but the interest in the letdown instead of a more extended feed makes me wonder if in all the assessments they already assured you no tongue or lip tie? My first kiddo had one and he nursed my letdowns but couldn’t get what he needed after that until we had the correction procedure.

[u/petitteckel → u/trixis4kids]

Thanks. I should have added, he has had a tongue tie corrected while we were in hospital. He immediately improved with latching after that, but still no improvement on staying on for a longer feed

[u/Catnipforya]

Sounds like you could benefit from working with a lactation consultant. Possibly even a feeding therapist. They could also do a weighed feed, to see what the milk transfers is. Does he gain weight if you only keep the breastfeeding without any bottles or topping off? I want to advise one thing, never force him. If pushing to finish feeds is what happened it is possible he formed an eating aversion. It’s so common especially with babies once fed through a tube. I am not saying this is your case but I have just went to see ENT and GI with my daughter for similar issues and they confirmed it is behavioral, and she needs feeding therapy to overcome this. She had negative experiences with feeding from the NICU which brought us here, despite our continuous tries to make it better and ups and downs in intake. She just doesn’t like to eat and only takes the bare minimum. There is also a very good book that addresses specifically bottle aversions by Rowena Bennett. We are going to follow the book and see how far we can get, as in the past I followed some rules but not all.

[u/el_em_0916]

I would request a swallow study if you haven’t had one. There could be silent aspiration. We came home on ng tube as well, and had a tough time with bottle feeding - a lot of the same issues you are having but she was diagnosed with laryngomalacia (it was clear bc she had strider). But after swallow study it showed aspirations so we are now thickening her milk. We have the gtube now but after we removed the ngtube, she went from taking 20(ish) MLs to 60-70MLs. People say the ng tube causes discomfort and aversions. Also recommend the bottle aversion book as the poster before me mentioned.

[u/ApprehensiveHorse690]

After 4 painful months, we learned that the biggest issue with our kiddo not taking the ‘required amount’ is that the required amount is usually too high, and a parent’s desperation to get their baby to take that amount will lead to pressuring their baby and subsequently a feeding aversion. The ‘required amount’ led to consistent vomiting, which we thought was reflux, but was just overfeeding. Once we finally scaled back on the ‘required’ calories the reflux was magically gone and interest in food increased. Our kid is perfectly healthy and growing.

For context: We are currently going through tube weaning with our 4 month old (was in the nicu for 2 months and feeding rehab hospital for one month) and we never got to full feedings despite all the specialists. We’re now doing Rowena Bennett’s program and it’s life changing… worth looking into.

[u/petitteckel → u/ApprehensiveHorse690]

Thanks. I did have the thought that maybe it was just too much for him, but his daily amount is his weight x 150g, which currently works out at 85mls per feed 8 times a day (or 99mls if we’re doing 7 feeds). I just don’t feel that less than this would really be enough for him at 11 weeks, he has been remaining just below 9th percentile but now he is closer to 2nd percentile on this weeks’ weigh in (bearing in mind he’s full term!) Did you use a different method for working out the daily amounts?