Help - 10 week old won't take enough milk

[Tasha121]

Hi,

Not really sure what I'm trying to achieve with this thread, but if anyone could help I'd be so grateful!

Since around week 8, my baby has slowly been taking less and less milk! He's now 10 weeks and I'm luckily if I can get 3 ounces in per feed - prior to this we were at 5 or even 6 ounces every 3 hours in the day. He does have silent reflux and milk allergy, he's medicated with omeprazole and on SMA Alfamino milk. He's been switched to Alfamino in the last two days as I took him to a&e as I was so worried about his volumes.

Yesterday he took near enough 5 ounces at every feed, but today, back to rubbish feeds again and screaming if I try to get him to take anymore.

I've tried feeding 4 hourly, 2 hourly, adding in an extra night feed - literally nothing works. He just wants to sleep at night and won't really dream feed, he'll take two ounces at 4am having last fed at 9.30pm and that's it! I've even flavoured the milk with a tiny bit of nesquik (advised by older son's dietician 3 years ago) but it doesn't seem to help.

I don't know what to do - my older son was the exact same, same issues with CMPA and reflux, and by 15 weeks was fitted with an NG feeding tube as he just wouldn't take enough milk. He had this until 20 months and weaning etc was a nightmare until it came out, I'm so scared to go through all that again.

I'm so so scared it's all happening again and is somehow my fault...bizarrely for now he's not dehydrated, still pooing once or twice a day, and is OK weight-wise, but only on the 25th centile still so can't really afford to drop any weight from this behaviour. He's still having wet nappies but they aren't as heavy as before.

I just feel helpless, do I have to wait for anyone to help me when he finally stops putting weight on/starts to lose it? A&E said to bring him back if the feeding issues persist, but without dehydration etc I don't think they can do anything beyond the NG tube, which is literally my worst nightmare coming true again. I feel so alone and depressed, my husband tries to help but I just feel like it's all happening again and must be my fault somehow...I can't believe I've had two babies who seem to hate milk now.

Should add he did have a posterior tongue tie cut just after Xmas, but this was nearly two weeks and seems to be healing well so I don't think it can still be connected this far only?

Hello,

Just want to let you know you are not alone!
I feel pretty much the same as you.

My girl was born in April 2023, from day one she had problems with feeding. With time it only got worse. Went to GP 3 times with no help and solution, they said she doesn't have milk allergy, only silent reflux and prescribed omperazole. She wouldn't take omperazole, day after day with it only more and more difficult. I was getting up at night constantly to feed her, she wouldn't take it. Day feeds were the same, making 14 bottles a day as she was constantly crying because she was hungry but she was in so much pain when having milk. When she was 3 months and we still got no help I took her to Poland (that's when I'm from) and she was admitted at the hospital twice, 2 weeks each went to series of tests including endoscopy, xrays, etc and they found that she has cow's milk allergy and fitted NG tube in. To be honestly I just think NG tube helped me to get some rest as she finally was full and not crying as much, she started developing and we have seen huge steps she made in such a short time. But then she started vomiting 4 out of 6 feeds a day. We tried omperazole she would vomit straight away, the same when repeated the dose.

Back in the UK I'm October again no real interest in her condition and doctors said just to continue to "manage the situation" and she is doing well.

But how can I manage the situation not sleeping for so many months? At some point I was only able to sleep 3h a day. She wouldn't sleep during day much and feeds just took over my life
.
She is 10months now and my life is all around her feeding I spend 10h tube feeding her (trying the bottle + tube feeding + holding upright for another 30min) plus 3h weaning.
There isn't a great improvement in her condition.

I feel angry, helpless, gaining weight like crazy but I don't eat much at all. I just don't think this nightmare will ever end and she will start eating..

Not sure if I can advise much as you went though it with your first baby.
Just wait and see if he might start eating?
Does he have reflux too?

I have seen you posted last month so hope things improved by now xx

Hi @Pjsallday06, thanks so much for your reply! My LO has just turned 17 weeks, feels like ages ago I posted this.

I'm so so sorry you are going through the same thing, it really feels like you're completely alone doesn't it, the only other babies I saw with an NG when my son had one were seriously ill, and I was too frightened to even take him out in case people stared or asked about it. All I can say for your daughter is, please please have hope. I have been where you are and it does get better, it's slow but this nightmare will end, I promise. My son was a nightmare with weaning too, probably due to needing the tube in hindsight, but working with his consultant, we took it out about 18/19 months and he started to eat properly for the first time. He was slower with using cutlery, eating 'proper' food ie. Sandwiche etc than average, but we got there and he's now 4 and eats and drinks completely normally. Does your LO have a consultant that's making a plan for removal? In hindsight, we probably should have removed our son's a bit earlier, but they said he needed some level of dairy free formula until 18 months, and I was worried he wouldn't take anything orally, so we stuck it out until then. Ironically, once it was out he would have a 6ounce beaker of oat milk until age 3ish every morning, I couldn't believe it! We also stopped the omeprazole then too, slowly weaning down over a week and he was fine.

Please hang in there, I did start to see a small improvement with weaning around 12/14 months, and then it slowly improved every month until the NG removal. I would push your doctors for a plan re:removal once you get past 12 months, and also see if you can have a visit from a feeding specialist for weaning help - we had a lady out twice only due to it being Covid, but she was very helpful and reassured me there was no physical reason stopping him from eating, Chewing etc. You should definitely be entitled to help like this.

My youngest has improved slightly, we had a 4 night stay in hospital last week where he had a feeding tube fitted for 24 hours, and then feeding orally picked up and we managed to come home without it. He's still very up and down with feeds, more down than up, but we have proper dietician support now and are concentrating his feeds, so if he drinks say 4ounce he's getting the calories of 5. This is helping with his weight and he's gone up a centile already which is great. I'm still having to syringe milk into him unfortunately, but my husband and I had a chat and decided we would rather have to do this than risk another baby needing an NG tube and then having another nightmare with weaning - I'm hoping he will take to food well, he already has 4 teeth through, hoping to start weaning at 5.5 months, and then I can start to not worry so much about milk. I've seen stories from others having a nightmare at 3/4/5 months and their babies improving a lot with milk feeds around 8/9 months, so I'm hoping we can get to that point once I can build his food up.

If you ever need someone to talk to who understands, please send me a direct message on here xx

@Pjsallday06 just to add something else, have you reassessed how much formula you're giving via NG recently? I say this only because I completely lost trust in my son's ability to understand his own hunger/fullness cues, and in hindsight I was still giving him way too much formula at 10 months, partly as his eating was so bad. However, I can now see this meant he was never very hungry and therefore had no motivation to eat! I would see if you can try to cut her down to the equivalent of three, 6 or 7 ounce feeds per day and see if that helps her solids appetite - I wish I'd done this sooner as I think the solids may have picked up quicker. If she has a bad day, you can always up the bedtime feed slightly as well xx

Definitely feels alone :(

The last week wasn't easy, she is constantly crying and just jot being herself.

We work with Pediatrician, Dietitian and Speech and Language Therapist.

They said it's not the time to remove the tube yet until she had 70% solids. It just feels like it will never happen.

Weaning is so difficult, she has one good go at it every 3 days or so and that's it.

Literally it makes me cry she doesn't want to eat, I constantly sing and play with her not to cry and have the best experience while weaning but every day is harder and harder. Making all food for her that just goes in the bin.

Dietitian also did the schedule we need to follow with reduced milk feeds to make her more hungry. But she is just hungry and crying a lot cause she doesn't have as much energy.

We decided it's time for us to go back to the bedroom ( I was sleeping in the living room on the sofa with her since came back from Poland in October). 1st night was OK, 2nd she was crying after 2 h we put her down and today she was crying 1h after, couldn't calm her down and finally back to sleeping together again.
My back is killing.

Thank you so much for your kind word of support, it really makes difference talking to someone who knows and went though it all.
I just feel like people either don't understand our situation or are just oblivious.
Everyone is trying to play a doctor and give advice how it was with their "normal child".
It really makes me angry sometimes cause they just don't get it. Most of them stopped feeding at night really early and they have no idea what 10 months of not sleeping feels like. Plus all stress with tube feeding, hospital visits it really is a lot

When did your first baby started actually opening the mouth to put the spoon in? X

Did the allergy stayed or he grew out of it?

How are you doing with your baby now? Hope he is eating more and you are managing to sleep a bit x

@Pjsallday06 so we definitely had problems with him opening his mouth and also finger food. It sounds mad, but I used to make a thick ish puree of meat,veg, potato etc and sort of smear it into his mouth on a small 5ml syringe (once in his mouth, he would then swallow at least!) It would take ages to get a few mouthfuls down him, but it got food in one way or another! We definitely saw a big change at 12 months, and then again at 14 months - he was a very late teether though, and that was when his top and bottom two teeth came through - he genuinely didn't seem to know how to eat things properly until then. Might have been developmental as well, but try and hold on until then, hopefully you will see something similar! He always liked dry Crunchy things like crisps, breadsticks etc as finger food, which I think is quite common with reflux, so he just had those as finger food for ages, and we just built it up.

The allergy was so strange, we tried to start the milk ladder at 1 and he was OK with step 1, biscuit crumbs, but wasn't eating well enough to go up through the next few levels. He then accidentally had some normal chocolate at 15 months, and was fine, so we slowly introduced products with milk, started cooking with cows milk, adding cheese to things etc, and he's never reacted to anything. We only ever gave him oat milk to have as a drink just in case a full glass of cows milk was too much for him, but he tolerated everything really well.

The baby is doing OK, he had 16 week jabs and that's flared his reflux, so we've had some bad days of feeding and sick, but he's coming out of it now and I'm just syringing in extra milk on bad feeds, which he's now tolerating a lot better. His sleep is a bit crap as we're in the 4 month Regression, but hoping to sleep train in the next few days so should hopefully improve.

It's very hard when weaning is also crap, are you planning for her to go to nursery/childcare? Ours went to a childminder initially, who had to be trained to do the tube feeds, but he only needed one on an afternoon, and I do think seeing the other kids eat daily helped him to slowly start to eat more. He went to nursery at 2 and the tube had been out a while, but that massively helped with things like using cutlery, exploring new foods etc . It might seem daunting but if it's in your plans, I would go for it and just see if it helps, I think it will x

@Pjsallday06 Sorry forgot to add, I would contact your feeding team and see if you can have a feeding specialist come to your house and watch you try her with breakfast/lunch/dinner. I'm in Leeds and this was something we had, she only came twice due to Covid, but she was really helpful with suggestions to help him open his mouth more/get him doing oral-based 'play' etc. You should definitely be entitled to this. Ultimately, saying you need to get to 70% of all feeding going in orally before tube removal isn't very helpful, my son was probably up to around maybe 40% when we took ours out, but unless she really doesn't improve much once she's 1, I would say you ultimately need to test it and see how she does (not yet obviously!). My son really didn't pick up well with food until it was out, and within weeks was SO SO much better, so honestly for now, I would just focus on trying to get her interested in some/any food, building positive associations with eating, and pushing the Dr's for specialist feeding help with weaning.

Hahaha I absolutely love the trick with the syringe! I might try it too!

We give her literally everything we can find to try,

It's really weird because she is opening her mouth and drinks water herself now, whenever she can taste the food she is pushing back with her tongue or spit it out. If she swallows anything she is gagging lots and it's the same for the past 4 months. I don't know whether it's because of the tube and the food sticks to it maybe. She is happy to bite on things like Rusks rice cakes etc just not swallowing. That's also a new thing since last week so our hopes are really high she will have the tube out by Christmas!

We are planning the start of the nursery the end of April. Introduction will start the end of March so I'm really worried as she is soo attached to me and I'm really attached to her! The nursery never had a baby with the tube which worries me how they are going to cope with her as she can be really difficult. Our hope is that she will see other kids and maybe something will change. She started pulling the tube out a lot and last time she had it fitted 2 weeks ago they said they might not be able to pass it again cause of trauma. We spend 3h at the hospital and finally after 6th go luckily worked but might not work next time.

So sorry to hear you had bad few days 😞 and I'm also really sorry this is all happening to you for the second time. It's so unusual to have baby with feeding aversion from newborn. We are just lucky and unlucky in one. Probably the same as me you have seen many rare cases, genetic disorders and babies that will never get a chance to have normal life, neither the parents. I think that part in all of this destroyed me the most.

I don't know why also I feel bad and a bit depressed when seeing babies that are chilled and feeding solids and bottle with pleasure.

It breaks my heart that and I don't know why I feel this way.

I shouldn't be jealous, I have a beautiful daughter that she our miracle after going through IVF for 4 years. But it hurts when she doesn't eat, crying straining and just generally not enjoying food.

Am I being weird?

They have never mentioned this is an option - did you request that from SALT team?

When your son was eating like 40% solids, how many spoons that was roughly and how many milk feeds still a day?

We are at 5 x milk feeds at 140ml and 3 x solids a day.

Did you take out the tube when you thought this is the right time or just tested the solids when he accidentally took it out and worked?

Thank you so much for your advice again! You can't even imagine how helpful you are to us!!! Xx

@Pjsallday06 honestly please don't worry, I wish I had someone to speak to when my son was going through it all. That's really positive you are seeing changes with food, even if she's not swallowing a lot. It could be the feel of the tube in her throat when swallowing is uncomfortable and putting her off, as she gets bigger the tube will feel smaller so that might help - do you know if she has the thinnest possible tube that you can get the milk down? My son started off with one for older kids that was too wide, but I asked if they had smaller and we went for the thinnest possible.

That's really tough you have to keep going back and forth to hospital, because this happened to us during Covid, we basically got abandoned and just had to judge a lot by ourselves - are you not trained to change the tube yourself? The community childrens nursing team trained me as I had to keep calling them out, it's not nice but I found it useful to be able to put a new one in at home if he pulled it out / when he went to childcare I had to go in and change it a few times for them.

Don't worry about the nursery, it's an unusual situation but your community nursing team should be able to train them on how to tube feed if you put them in touch with each other - my first childminder did the training, and it was all fine.

It's strange and I'm still upset I've had two children that seem to have milk aversion now, but I genuinely think with my mine, they just don't like the allergy milk they are on I tasted some once and its really grim, if you don't have very food-motivated babies, I can see why they'd never willingly drink much! I'm just trying to keep positive that my youngest isn't as bad as my eldest was, and hoping that without a tube, weaning will go better this time!

It's so normal to feel angry and resentful of people with 'Normal' babies, I have been there, I see people with 4 month olds like mine that drink 8 ounce bottles! And imagine mine will probably never get to that level. I would say though, if you are really struggling reach out to your health visitor or GP and see if you can get some counselling, I didnt last time and basically developed PTSD - my mindset improved when I went back to work and had to trust others with him, but i think without that I would have had a nervous breakdown! You aren't weird I promise, you're basically mourning the fact you haven't been able to have a normal feeding experience.

Feeding support - yes, speak to the dietician/SALT team and ask if they have a feeding specialist who can come and witness you feeding solids. I'm really sorry I can't remember the lady's job title who I saw, but it was definitely something like that.

The 40% level - it's hard to say exactly with food, but he would have maybe half a slice of toast or a small baby bowl of Porridge, equivalent size bowel of lunch, by 18 months he used to have jacket potato insides mixed with different fillings, this was good as it was soft and easy to chew but got different foods into him. Same again size for tea, and some baby crisps etc as snacks. Only quite small portions.

The milk - again, we never had any guidance on what we should feed him, so I built him up to tolerate bigger feeds less often to keep him roughly in line with his age as he got older. At 12 months he was having x2 240ml feeds morning and night, and a small 120ml feed at about 3/4pm. By 18 months he still had 240ml before bed, we'd got rid of the small afternoon feed about 14 months, and then we started reducing down the morning feed to get him eating more breakfast.

I can't 100% remember but I think we felt happy he was eating better, and was also walking by then which increased his appetite, we also felt OK with knowing he didn't really 'need' to drink milk at that age, so were OK to take it out and just see what he did and get calcium into food if not.

Sorry for the giant reply, wanted to make sure I answered all your points! Xx

@Pjsallday06, I so hope things have improved for you and your little girl? My boy is 11 months now, time is flying x

Hi Tasha

can I ask what happened with your second child? My first son was the same as yours - CMPA and reflux issues. He never went on a NG tube as he accepted dream feeds and we managed to get it into him that way. He is 2.5 years now and totally fine, just fussy with food.

I have 13 week old twins and the girl has CMpA and silent reflux which was horrendous in the early weeks but we have got under control now. The

Hi, sorry if I'm not replying to you directly! He is now 2 next month, and absolutely fine, after all that! I had to keep syringing in extra milk until maybe 7-ish months, but he was much more physical than my eldest, started trying to crawl around this point and I think his appetite grew- by 8/9 months he was taking 5/6 ounce bottles totally fine and he LOVED food, we were so so lucky with weaning this time around. He doesn't have any milk now unless he's at nursery, but thats mainly because we dropped bottles a couple of months ago and hes just not fussed by milk otherwise! He eats incredibly well most of the time, often has two portions of food at nursery, and is much sturdier than his brother at the same age. Milk ladder wise, we started and he flew through it, only thing he's never had is cows milk as a drink but he has it in stuff and is fine - still no idea if either of mine were ever truly allergic or not, but they seem to have fully grown out of it.

Thank you - that is so great to hear. My son’s feeding issues and reflux caused me so much trauma, when we first started seeing similar issues with my daughter so early on, it’s brought it all back. So it’s reassuring to hear that both your children are absolutely fine now. My son still has his milk allergy but grew out of the reflux when he turned 2.

Part of the issue with our son was that it took so long to get him the right milk and medication. This time round things were in place a lot quicker for her but I’m not totally convinced she is feeding without pain and discomfort, even with the right milk and medication. Something still isn’t right. We are trying to do the no pressure / respond to cues but she barely has any and can easily go 5 hours without feeding.

I think our next step will be fortifying feeds if she doesn’t gain weight this week. I’ll also ask our SLT about the syringe. It may work as she doesn’t completely refuse and will usually will take 3 ounces at each feed - sometimes up to 5 if we are really lucky - so we do have some options. She won’t take a dream feed at all or feed overnight though. It also doesn’t help that her twin brother has none of these issues and basically drinks double her intake a day!!

I just have to remember that they do eventually grow out of this but it is so hard when you’re in the thick of it! I hope it is all beginning to feel a distant memory for you as the years go by!

I'll be honest and say that hospital staff/consultant's didn't like us syringing, but we wanted to do anything to avoid an NG tube, and he was fairly chilled about accepting extra that way - sadly from my elder son, I knew how to pace etc and check I wasn't overloading him/making him sick, but it was a hard couple of months of forcibly topping up. I forgot to say that we did also concentrate his feeds like i did with his brother with the help of a dietician - that might be something they can suggest to you? I did this as well until about 8 months or so when I was more happy with his volumes- at least you know they are drinking less but getting more calories. I hope weaning is a good turning point for you too, hang in there until then