Ongoing difficulty bottle feeding

[whalstib]

Hi all,

Looking for an advice/ideas around ongoing feeding issues. Baby born at 30 weeks, now 12 weeks adjusted and has been home for 12 weeks. We have continued to have issues with feeding on and off and we can’t figure out why. He is on 26kcal neosure in breast milk due to slow weight gain. He has weeks of refusing to eat and it’s stressful to get him to take enough for hydration. Other weeks, he does much better (and no changes made). We are feeding side lying with transitional nipple per recommendation of NICU f/u team who did an assessment about 3 weeks ago (dr browns bottle). We are going to schedule a swallow study to rule out aspiration. At one point, we did try switching formulas but that didn’t seem to help. When he is having a bad eating week, he spits up the entire feed at least once/day. When he is eating well, he doesn’t spit up. It’s confusing and we feel at a loss! We are continuing to work with his PCP and NICU f/u team but Any advice would be helpful!

Thank you and thank you to this community-it was helpful to have others in similar situations when our little one was in the NICU.

 

[richard76]

@whalstib My baby was a 30 weeker also. She was severely growth restricted so when she was born she was the size of a 24 weeker. She developed reflux and a severe bottle/breast refusal. It caused me so much stress. I cried every day trying to get her to eat. I was recommended a book by an IUGR thread on what to expect called "your baby's bottle refusal" by Rowena Bennett. I listened to an audio reading of it with headphones while I pumped. It changed our lives. I realized we may have been overfeeding her as recommended by our pediatrician and were using a lot of "gentle pressures" to get her to eat as taught to us by the NICU. I really loved our NICU and love our pediatrician but their main goal was to get her to gain weight. So instead of listening to her cues, the amount they said she needed in a day I lived by bc I was terrified of her losing weight. Anyway, I was skeptical at first that a book could make a difference but it really changed my perspective and helped us. We also did the swallow study and it came up normal and we did OT as well. Just an alternative to keep in mind because the author is super knowledgeable on the subject and explores a lot of options and reasons behind why it is happening to your baby

 

[light4]

@richard76 Seconding that Rowena Bennett book! It helped us get our 32-weeker off the NG tube. We had also been overfeeding her when following the strict NICU regimen at home. By following her cues, we were able to ditch the NG. She's much happier and gaining good weight ever since.

 

[richard76]

Oh also just to give a bit more credibility to how desperate we were for an answer.. the only way I could get her to eat was rocking her to sleep and dream feeding. Which I know was not good but I was out of options. I brought this up to multiple pediatricians from our team and they said just keep doing what you're doing to get her to eat. It was such a tough time and I wouldn't wish it on anyone. I hope.you find some answers soon

 

[whalstib]

@richard76 Thank you! This is me too-every feed is hard and I am constantly worried about his growth. I bought that book 3 weeks ago and implemented some of the protocol but admittedly, resorted back to pressuring him to eat after he lost some weight. I’ll revisit the book-I know we can’t keep doing what we are doing!

 

[livingrightinwrongworld]

@whalstib The book states that some weight loss may happen in the early stages of following the plan. But over time it resolves and your baby will begin to enjoy eating without having to be fed to sleep or dream fed.

 

[jesusistheultimatewarrior]

@whalstib My baby was on the 26 cal and started to refuse to eat as well. It seemed to be soooo hard for him to digest and so hard on his poor belly. It also caused him to basically never be hungry. We switched to 24 cal to see if he’d handle it better and it worked - volumes improved to where he was getting more calories than what he was getting on the 26 cal and he was spitting up less.

 

[whalstib]

@jesusistheultimatewarrior Thank you!

 

[livingrightinwrongworld]

@whalstib Neosure and fortifying can be very hard to digest. They can also feel constantly full. Rowena Bennett’s books helped us a lot.

 

[wright93]

@whalstib My baby was born 30 weeks at 2pb 12oz and is now 7 weeks adjusted. She was also on fortified breast milk with neosure and struggled so much with reflux and refusing the bottle. My supply eventually dropped and we needed to do more formula bottles and she really struggled-we switched to enfacare premie formula and that helped so much. Now she is fully on formula and we do half gentlease and half enfacare. Don’t be afraid to follow baby cues and to switch formula, it will take a few days to a week to adjust to new formula or caloric change.

 

[retiefff]

@whalstib Do the swallow study!! We just did one and were aspirating! We start OT tomorrow and ST later in the week. Waiting to hear about early intervention. I’m hoping we get approved! ( late term preemie!)

We tried multiple bottles and Tommee Tippee extra slow flow is what is working for us. ST who did our swallow study told us not to change since she aspirated on every bottle they tried. We can only find them on Amazon.

 

[idahobangbang]

@whalstib OT referral! You can go through early intervention or privately in the states. See if the pediatrician has recommendations. Sounds like you need an updated assessment and ideas since being in the nicu. It’s common for preemies to have some feeding issues even post discharge.

 

[whalstib]

@idahobangbang Thanks, we have one placed through EI and are waiting for this. We also saw the nicu team last week and the recommend continuing the plan we are on despite challenges as he needs the extra calories, but it’s a battle getting him to eat every time. It’s just not working.

 

[idahobangbang]

@whalstib I’m sorry, I know first hand how difficult that can be. We ended up fortifying to 27 calories for months until we started solids. We fed our child as she was falling asleep because that’s the only time she would eat. We tried some different bottles and medicating for reflux and I think the medication helped more than anything. She didn’t spit up a lot but was clearly in pain after eating. Sometimes EI can take forever in certain states. Insurance will sometimes cover private and they can see you faster if you need support in the meantime.

 

[siege777]

@whalstib Have you used simethicone (gas drops) or gotten a Pepcid prescription? My 29 weeker is on 27kcal and would be starving, but screaming in pain at eating. Turns out she had horrible reflux and gas pains. One dose of each and she started eating like a champ again - probably enough to drop down to 24kcal after her appointment next week.

Talk to your pediatrician to see if they can recommend trying either/both of those.

 

[whalstib]

@siege777 Thanks! Yes we have the gas drops but don’t use them every time-maybe I’ll try that before feeds. He does seem to be in pain when eating but he stops screaming/being upset immediately after we stop trying to feed him-he goes right back to being a happy little guy.