Refusing to eat

xladybassx

One of my twins is having a lot of trouble eating and I am completely lost as to what to do. They were 27 weekers, currently 9 weeks adjusted. Lorelei eats like a champ, and is consistently gaining at least an ounce a day, frequently more. Amelia is the complete opposite. When we took her home almost three months ago the NICU had been giving her 2 ounces of breastmilk at every feeding, 8 times a day. We continued that for at first, and when it became clear that she was not gaining weight as well as her sister we began fortifying her breastmilk with neosure. 22 cal, then 24, 26...and now we are up to 28 cal. We also add 1/4 tsp per ounce of spitup formula to combat reflux.

She absolutely refuses to drink more than 2 ounces, ever. Usually it is more like 45-50cc's. She is eating 7 times per day, so only getting 10.5-12 ounces per day. At around the one ounce point she will start to fight us: arching her back, shaking her head, throwing her head back, screaming, crying, moaning, kicking, trying to push the bottle away, and recently, clawing at our hands with her fingernails. Eventually she will tire and just leave her mouth open, refusing to suck. She acts like the bottle is causing her extreme pain. She does have GERD and is currently on Prilosec. We have also tried Zantac, but that didn't really do anything. She takes simethicone (gas drops) before every feeding, and we stop to burp her every few minutes. We have tried 8 different kinds of bottles. We have tried a quiet environment, singing to her, one of us reading a book while the other feeds, changing her position...nothing works. She has been to the gastroenterologist and had a GI ultrasound which came back normal. We have tried hypoallergenic formula, with no change.

It has gotten to the point where I cry almost every time I have to feed her because it feels like I am killing her. She only weighs 6 pounds 13 ounces. Many days she loses weight, and when she does gain it is only very little. The pediatrician said to see what the gastroenterologist had to say, and the gastroenterologist said to give it another month and see what happens. I don't feel like we can wait a month. Feeding time is so stressful, for all of us. I spend hours every day researching how to help her, and what could be wrong, but nothing fits. We see her ped again tomorrow and I am planning to show him a video clip of us trying to feed her, because I don't think he gets how bad it is.

I am hoping someone had suggestions about how to help her, or what else could be wrong. I have tried absolutely everything I can think of, and I am really worried about her.

meldoo2002

I think a video for the doctor is a great idea.  We had horrible feedings with Joey too to the point that I took him off Neosure even when the doc told me not too, but he weighed more by then and was gaining weight it was just painful to feed him.  It sounds to me like she's totally uncomfortable.  Has she had a modified barium swallow study done to see how her swallow is functioning?  I think I'd want that to happen next to make sure she's not aspirating.  It all sounds so awful )c:  Hang in there… I hope you get some answers.  I would get a 2nd opinion too I couldn't deal with another month of that.  Trust your mothers intuition… something is hurting her or just not right.  (((hugs)))

LaciJaxx

Def sounds like reflux. I'd say call your pedi to get your dosages upped and/or changed meds. Our LO grew so fast that we were constantly upping his dosage. It's all based on weight. Once he started having symptoms, I called right away and got them changed. Keep at it!!!

LaciJaxx

Also Zantac talesw awhile to kick in. I'm not sure if your LO is still on it from your post but it can take a week to see the full results. Not sure about prilosec. We would notice an improvement in a few days but that's not always the case.

Have you ever had heartburn? Just think how it feels and that's what your baby is going through. It's extremely uncomfortable and I'm sure scary for them. The muscle just isn't developed so it's literally coming back up.

Make sure to hold your LO upright for atleast 20-30 mins after every feeding. Burp alot. Try smaller meals more often. Is your LO sleeping on an incline instead of flat? Also hold your LO more upright for feedings, almost sitting up.

xladybassx

Thanks for the suggestions! Amelia was on the Zantac for 2 months, so we are pretty sure it doesn't work for her. She has been on Prilosec for 2 weeks, but I don't remember if the doc said it should kick in right away or take awhile. We tried putting her crib mattress on an incline and that actually helped for a few days, and them we kept finding her balled up in the bottom corner so I decided it wasn't a safe option. It did look really funny though! We have not done a barium swallow yet, but they did take an ultrasound recording of her eating for a minute, I'm not sure if that would show the same thing, but I will ask! I am really glad I took a video of us trying to feed her. It seemed to help our ped understand the situation better.

For now we are going to try smaller, more frequent feeds. Our ped suggested as small as 10cc's, every 30 minutes. He also suggested swaddling her before every feed so she can't thrash around as much. I don't love the idea of restraining my baby, but hopefully a swaddle would calm her enough that she doesn't want to thrash around in the first place! I didn't think to ask about changing her meds since she has only been on Prilosec for two weeks, but I will definitely ask about that at our next visit if it hasn't improved. Our ped is giving her 2 weeks, and if her weight gain doesn't improve at all or gets worse he wants to get her set up with tube feeds for a little while. I don't love that idea...but I understand that with weight gain the reflux will get better. The timing of this 2 week ultimatum sucks because she is having surgery tomorrow (hernia repair) so her appetite might be wonky. I'm also hoping she might feel better after her hernia is repaired. I don't know if there could be a connection there, but now I'm kind of hoping there is!

Jenrn2203

It's a very heartbreaking situatition, our 24 weeker come home doing the same thing had such bad reflux she refused the bottle and now has a gtube , her Refux is pretty much gone now finally after taking her to a chiropractor and it's amazing how that helped. She still refuses to eat orally but is improving, it's a long road and I hope something works for you., feeding every 30 minutes is exhausting and stressful keep your head up. Trust me, we tried everything for our daughter

meldoo2002

Do you get Early Intervention services yet for either baby?  I think that if you are going to the feeding tube route or even just having such difficulty feeding her it might be worth having her evaluated through Early Intervention.  I work for them in MA and we have occupational therapists that do feeding therapy with babies… especially when they have a feeding tube because the oral feeding issues can get worse.

xladybassx

@meldoo2002, we haven't been to any early intervention, only the NICU follow up clinic. I didn't think they qualified unless the clinic refered them. I don't have any information about how that works in Georgia, but we are moving to Washington in a month so I should probably just look into how it works there. Thanks for the suggestion!

CopperPoppy

@xladybassx‌ did you ever figure out what was going on or anything that helped?

I was talking to one of my NICU nurses about bottle/ feeding aversion which can happen for some preemies when they refuse to take a bottle after a period of time. I don't know about it personally but she mentioned it because we are trying to get our guy to take bottles (so far not successful) and they warned us against aversion. Maybe you can ask your doctor if that's what's going on?

xladybassx

@CopperPoppy‌ I was thinking aversion might be to blame, but our ped said if that is the case there is really nothing we can do except power through and hope that she gets over it. Good news though she just had hernia repair surgery last week and since then she has been eating a bit better! We were advised to cut out the fortifying formula and just let her eat when she wants rather than on a schedule while she was recovering. She only wants to eat about 5 times a day, but she is taking 2.5-3 ounces each time! Before we would fight to get 1.5-2 ounces in her. did not expect her hernia repair to have such a dramatic influence on her eating trouble, but it seems like they must be related somehow. I tried adding just a small amount of the fortifying formula yesterday and she went right back to refusing her bottle, so that just have something to do with it too. She lost a few ounces right after the surgery and she has not gained any back yet, but I am hoping if she continues to eat higher quantities we will see positive results.

Mcsweets

DS decided he HATED the formula we were supplementing him with.  He was hungry enough that he'd finish about 2oz and then would just constantly spit out the nipple/formula, even though he was still hungry. (We we supplementing with Nutramigen).  DD doesn't mind it.  We now have DS on Similac Sensitive and he eats about 4oz-5oz each feeding now.

Edit: He didn't seem to mind the Nutramigen at first, but after about 2-3 weeks he changed his mind.  We even tried mixing it with BM and he still hated it.

CopperPoppy

@xladybassx‌ so glad to hear that she had some improvement after her surgery! I've been thinking about you guys. It's amazing how all those little factors can have such a huge difference in feeding. Hope she keeps gaining and eating well for you.

And @Mcsweets‌ good to know about the different supplements. They will probably send us home on enfacare.