Feeding Aversion SOS

[jsw3883]

Welp Reddit it happened. Our miracle little 550g baby now almost 13 pounds can breath but in 2 days of cue based feeding she now rejects bottles, all of them. We went from 30% bottles to 0% in 2 days.

I can’t help but wonder if our nursing staff is just so used to baby’s hating bottles since we are a longer term unit they just aren’t good at it, but that’s another conversation.

any time she’s presented with bottle she either whips her head around or pushes it out with her tongue.

We’ve asked to advice from the medical team and they are clueless other than try another bottle type…which I couldn’t be more disappointed about. She loves her pacifier so I’m trying to salvage this before we go straight to a g tube.

What worked for you all? Any tips? I’m willing to try anything.

 

[gloryriver]

@jsw3883 We worked with OT and SLP. He does great with bottles now, but won't eat solids. I kinda wish we'd gone ahead with the g-tubeb it's been 3 years of feeding therapy.

 

[jsw3883]

@gloryriver Well they won’t let us discharge without figuring it out or getting a gTube, so one of the two things will happen. But I think what you are describing is why our hospital won’t send home with NG’s, as the feeding issues often keep hanging around.

Thank you for the feedback

 

[siege777]

@jsw3883 So my daughter had a bottle aversion after she got home (we were over feeding her, insisting she finish bottles when she wasn’t hungry, etc because we were still in NICU survival mode). To combat that, we offered her bottles every 3 hours and let her drink them or not. If not, we would offer again if she was showing cues or in another 3 hours. The first day, she only drank 11 ounces. The second day, 13. Within 5 days, she was back up to 17 ounces per day and we kept only offering when hungry or cueing.

Because weight gain is so important in the NICU, I don’t know if they’ll let you do what we did (basically let her get hungry so taking the bottle became her choice) at home.

But maybe taking the pressure off could help? Maybe offering a bottle every feed and if she says no, just go to tube feeding without continuing to insist?

Also, it could be worth having her tested for silent aspiration to see if she’s refusing because she’s choking.

Good luck!

 

[helentina]

@jsw3883 Noooo! I’m so sorry! My son is the same way and has a g tube so I’ll be stalking the comments

 

[jsw3883]

@helentina We are thinking we may be heading toward a g tube, just trying to give it a last shot since she’s still very pro pacifier. But if the medical team is is no help we may just go that route to get discharged.

 

[iza]

@jsw3883 I’m sorry to hear this, I know it can be super stressful. I don’t have exactly the advice you’re looking for, but im still hoping helpful nonetheless.

Your family and mine took an identical NICU journey. We also felt (in our case bc of what nurses said about each other) that each nurse had a separate way they fed babies, so we felt ours was just confused. We also felt some nurses were frustrated that our LO wasn’t taking to it, because they had other babies eating just fine, and couldn’t spend a lot of time trying to feed ours. I had to argue with the head nurse one night about one nurse just flat out NOT bottle feeding at all, and putting it all through the NG. A story for another day.
In the end, we chalked up the oral aversion really to being intubated for 72 days, with an NG tube they kept ripping out bc it was irritating them, NIMV, CPAP that they were just like STOP putting the bottle near my mouth and every time we tried to feed, their defenses went up. Truly I couldn’t blame them.
We ended up going the g tube route because at 169 days there was nothing else keeping us there and our LO needed to be home.
I fully understand wanting to exhaust all options before g tube surgery, we did too. We had been recommended Dr. browns and a certain nipple size but found out they had changed their sizes so we ended up buying a tougher suck one than we thought. We opted to stay for more feedings too bc we’d have more success when it was us feeding. I would say see if you can work with SLP and/or OT and see if they can help. In any case, even though it didn’t work out with bottle feeding, we felt supported in the decision to move forward with the g tube.
We tried holding our LO many different ways, side feeding, sitting sort of upright, but slanted in our arms, etc.
We spoke to GI, our nurses, nutritionists, any of the doctors on our team many many times before making our decision.
Best of luck ️ you and your family are rockstars

 

[srcnfk]

@jsw3883 I’m so sorry. Have you tried another bottle? We’ve found success with the Lansinoh bottles after trying Philips avent & of course the NICU staple, dr browns. She took to them right away and was previously getting so upset and was falling asleep or wasn’t into it for a couple days which sent me into panic mode. Thankfully the early intervention OT came by and brought this bottle. She has a “moderate lip & tongue tie” that we didn’t want to treat surgically and it’s done very well and lessened on its own with these bottles. I’m no expert at all but perhaps your LO has difficulty feeding due to this? NICUs typically don’t check for it, it’s quite controversial, and they never offer another bottle so it’s potentially worth a try before a g-tube. Also did you’re able there’s the bottle feeding aversion book by Rowena Bennett. I’m not sure how much you could utilize that there though. It was close to that for us at home but our early intervention OT recommended this and she’s 12lbs at 14+2 actual and 7+2 adjusted and was born at 3lbs 9oz for reference. Anyway, best of luck to you and LO, sending good vibes!!

 

[oaken]

@srcnfk Seconding trying other bottles, my smaller twin really didn’t click with bottle feeding until we found the right bottle that worked for him, at which point he picked it up so quickly after refusing the NICU bottles for awhile. I would recommend getting and trying a bunch of different ones if you can. You may also be able to adjust the nipple size/flow, but should run that by speech/OT to make sure it is ok with your kids specific conditions. Comotomo bottles with a slightly faster nipple were the secret for us, our smaller twin really hated the preemie slow flow nipples.

 

[srcnfk]

@oaken This. You can return easily if you order on Amazon, or if you’re not strapped for cash, donate them!

 

[jsw3883]

@srcnfk That is the plan today, a new bottle, and we’ve revoked the ability for the nurses to feed here because we don’t trust them. She haaaaaaaates dr browns.

I’ll have to check out that book, I know abunch of people have found success with it.

 

[srcnfk]

@jsw3883 Yep, your baby will do so much better with you guys for sure. I think one of the things is to just introduce it, let them reject it, take it away, wait 5 minutes. Maybe a few less if baby shows hunter cues in this case. I haven’t read that far but I can look more into it.

 

[jsw3883]

@srcnfk The schedule will be brutal but we’re trying to work out a world where I can still work and we can both sleep some and she can still pump but I guess this is the home stretch.

 

[lorien]

@jsw3883 Good call on revoking the nurses’ feeding privileges. A key point in that book is that you should limit the number of people doing feeds while you’re overcoming an aversion (ideally only one person is doing them).

 

[jsw3883]

@lorien Schedule wise I’m not sure we can get down to just 1, but it will just be me and my wife.

 

[jwgu]

@jsw3883 Have they done a swallow study? We had the issue of bottle refusal after we got home. We had a swallow study done and it turned out she had mild penetration of her airway bc the nipple flow was too fast. She was uncomfortable and started associating eating with feeling uncomfortable. So as soon as she realized she could refuse, she did! We started feeding therapy and slowed down her nipple flow and tried to giver her a little more autonomy in how much she ate without forcing it (much harder to do when you’re still in the NICU. I understand) and things have slowly improved!

 

[jsw3883]

@jwgu Appreciate the input, OT is confident this isn’t a swallow issue, she’s put down a few huge bottles and OT thinks she can swallow fine. We thought it was a breathing stamina issue but it’s all turned sideways the last 2 days.

 

[austinmiles89]

@jsw3883 Nothing to say just but commenting to say hi and wish you lots of luck.

 

[jsw3883]

@austinmiles89 Thanks! Why on earth this sub downvotes people trying to avoid surgury is beyond me but I appreciate the support

 

[austinmiles89]

@jsw3883 I am not sure. It is your baby afterall and it is your right to feel whatever type of way about surgery.

In my case, I was completely opposed to the G-tube. I am not trying to demean anyone who has chosen to go that way or people that had no other way, but in my experience, I feel like the NICU nurses didn’t have the time to actually sit down with our baby to work with him. They had multiple babys to feed so it makes sense, but also our NICU was horrible in scheduling our primaries with our baby. Made no sense.

I ended up suggesting for the feeding tube through his nose to be removed and to see if he would sink or swim, and he swam (barely). He wasn’t eating what they wanted him to eat but he was gaining weight still. So we asked the doctor if there was a minimum that he needed to eat and he gave us a number based on hydration and he met that number and got released.

He didn’t start fully eating like they wanted until 2-3 weeks after being home and he is doing great now and we avoided in unnecessary surgery so I completely agree with your concerns. Every child is different but the NICU treats them all the same which is fine but there has to be wiggle room to adjust according to the needs of the child.