Feel as though I'm failing my newborn baby

[user738383]

This is going to be a long thread. Apologies in advance. Please do not comment if you have nothing productive/positive to say as I'm already feeling extremely low.

I gave birth to my newborn baby at the end of November (she's 9 weeks tomorrow) via c-section. I had her three weeks early due to complications with my placenta. Was initially meant to be induced but it wasn't really working so I opted for a c section.

Being a mum is something I always wanted for myself. I always envisioned myself having around two kids and pouring the unconditional love I believe a mother should give her child, into my own children.

I found the early newborn stage somewhat difficult but nothing major. Just adjusting to the postpartum anxiety and recovering from a c section. I'm someone that can survive on minimal sleep so I was okay with waking up every two hours to feed my baby.

However, I noticed 2-3 weeks in that she was always restless, always spat up a lot of her milk, had a screaming cry, had eczema, pain when pooping (would cry so much) and after speaking to many professionals I finally spoke to a doctor who suspected she has a CMPA and this doctor did prescribe her Pepti 1. I also spoke about how I believe she has reflux symptoms and was prescribed Gaviscon.

Anyways, fast forward she has been on the Pepti 1 milk around 5 weeks and after week six I'm supposed to give her normal formula again to see if the symptoms return and if they do then she would be given an official diagnosis.

I've found the last few weeks really hard. Although I thought her getting the prescription milk and Gaviscon would take some time before I could see any difference. I feel like I've found it's gotten worse. My baby cries for hours and hours. She wants to be held and kind of rocked up and down constantly. She cries when feeding, has bad reflux after feeds, cries to be fed every two hours (still at almost 9 weeks) but then also refuses some kf these feeds but then cries as she wants milk, takes a few sips then lets out a painful cry. I've tried the Gaviscon, Pepti 1 and Infacol. Nothing seems to help. Although she wakes up every 2 hours I'm not actually getting much sleep because after drinking milk she's restless and makes many noises (that scare me and keep me up. By the time she settles it probably takes 1-1.5 hours and I then only get half an hour - 40 mins sleep before she wakes up again and the whole process repeats.

When she naps during the day, she's restless, she naps for ten ish mins then cries and wants to be held/rocked up and down (I think it soothes her stomach) but this also means I can't get anything done and that she is fussy from not getting proper naps. I feel as though I'm really struggling to cope now as despite the fact that I can survive on waking up every two hours. It's all starting to catch up with me. I've spoken to numerous doctors and they all just say she'll grow out of it. I'm sure reflux is something babies do grow out of and CMPA can be treated but she's so unsettled all the time whether that's screaming in pain or wanting to be constantly rocked up and down. I feel like that's all the doctors really say and just prescribe some Gaviscon and send me on my way.

Waking up every 2 hours. Getting broken sleep of 40ish mins at a time and then having a crying, angry and unsettled baby all day is hard. My partner does help but he has to work and his work is driving related so I try not to get him to stay up too much at night due to him having to drive the next day and he needs to be able to focus whilst driving. He works long hours during the day as I'm only entitled to maternity allowance and financially we're struggling a bit. My dad's also in hospital with sepsis at the moment and I just feel like I have a lot going on 😢

Definitely try a sling. And don't worry about habits - your baby is tiny and biologically wired to sleep on you/be close to you. Contact naps in the carrier are your friend.

And yes you need to ask for an amino acid based formula and an allergy referral.

OP, It sounds like you're advocating for your baby just as you should. My DS was very similar to this. He wouldn't sleep more than 45 minutes laying flat but would sleep on me for hours when I was holding him on the sofa. My mental health really suffered and I felt very isolated.
It wasn't until DS was 3 months old and I went 24hrs with neither of us sleeping for more than 15 minutes that the GP took me seriously and referred us to the children's hospital.
They diagnosed silent reflux and prescribed Gaviscon and omeprazole. You might see if you can get omeprazole added to the mix to see if it helps. If it doesn't help there is no harm done for trying. DS was like a different baby almost overnight once we got his reflux sorted. He started sleeping regularly and his appetite improved. Hopefully the non-dairy formula will make a big difference too.

I wish you all the love and support. It might seem utterly relentless with no end in sight right now but it WILL get better. Try not to be hard on yourself on top of all that you've got going on.

So ironically my LO keeps having naps today? But again, I'm not quite sure what's normal for her because she's usually so unsettled. She woke up around 9:30am and had a bottle. She then had a nap from 10:15am - 10:52am. She then woke up for a bit and had another nap from 11:20am- 12:07pm. She just had some more milk at 12:12pm and looks like might be dozing off again - is this normal? Could it be because she hasn't been napping much on other days?

Another thing I was thinking and researching (as you do when you're a worried mum) is could she be going through a leap? She was born on the 28th of November 2023 but her due date was 17/12/2023. Therefore, she is around three weeks behind although I think you use corrected age for babies born before 37 weeks, however, apparently for the leaps you use their due date as opposed to their birth date. Could her increased crankiness be a leap? :/ her symptoms have always made her a bit of a demanding baby but the past week or so has been really bad. I'm trying to explore all avenues!

Oh OP you are absolutely NOT failing her! Look at how hard you are working, how you’re fighting and going back to the doctors for her!

Mine both had CMPA. The first was absolutely horrendous, we went through all of this. By the second I knew what was happening so had control. If Pepti 1 isn’t working you need an amino acid based formula. If the GP is not helpful, it may be helpful for you to find your local area prescribing guidelines - take them in to the GP and tell him what to do. Here’s the Bedford, Luton, Milton Keynes one as an example - you’re on the green line, you need to move up to the Amber. If you want to PM me your approximate location I’ll search for your local area one for you. https://www.cambscommunityservices.nhs.uk/docs/default-source/bedfordshire-childrens-services/Beds---Paediatric-Resources---N-D/bedfordshire-countywide-prescribing-guidelines---specialist-infant-formula-december-2019.pdf?sfvrsn=6

Next, who do you have that you can ask for help? Do you have a friend, family member, even an acquaintance nearby? I’d happily go and hold a baby (even a crying one!) for anyone for a couple of hours to let them get a bit of rest. It is ok to ask for help, you are not an imposition. If you don’t feel like you know anyone, think harder - a neighbour, a work colleague, the wife of a colleague of your DH?

OP I’m sure you are doing wonderfully and you sound like you care so much and want to get it right, which makes you a great mum! Try to be kind to yourself.

My baby was born at 32 weeks and did suffer with some reflux, although not to the degree you are experiencing. The neonatal nurses did suggest raising the head of the crib/baby sleeping on an incline as a way to help. This is what they do a lot in hospital and if your crib has an incline feature, that can help. I breastfed my little one but when she struggled with weight gain we tried a prescription high calorie formula which gave her awful reflux and she hardly slept, made horrible gurgling noises and was more like you described. It is distressing and you must keep returning to the HV/GP to get support with this. I ended up seeing a lactation consultant as had lots of difficulties with my baby’s weight gain and wanted specific support as worried my milk wasn’t good enough. Her help was amazing and she also recommended seeing an osteopath (for baby) to help with any digestive discomfort, so that could be something to look into. Almost important was the support and confidence boost she gave me as a new mum.

My friend’s DC has CMPA and switched back to breastfeeding after a similar length of time to yours. It wasn’t easy for her and did mean dietary changes for her, but did help baby.

In terms of leaps, it could be that but also I found my baby didn’t really follow them anyway! Corrected age is only considered for those born before 37 weeks but no harm in looking at due date and birth date, but as I say, I personally found it all a bit random!

Please look after yourself as best you can in the meantime. Try to put no other pressure on yourself and just look after you and baby. You are doing fab, but keeping shouting for help when you need it.

My baby had a really sore bum for 3 weeks, it was almost like an open wound. He also had bad reflux. I knew a paediatrician personally and she suggested it was CMPA, so that probably helped the gp take me seriously. I think the gp was a trainee so they were maybe more open to listening. They prescribed milk with broken down milk protein and then when I said there was room for improvement and wanted to try neocate, they prescribed it. I challenged my baby with dairy a couple of weeks after changing milk by eating butter and his bum flared up so it was clearly cmpa.
I combination feed him and had to cut out dairy from my diet. Dairy apparently remains in your system for 3 weeks so it took about 2-3 weeks before his bum improved. It completely healed though. The reflux improved somewhat but not completely with the change of milk. He’s outgrown it now though.

@Sandcastle2 thank you for your response. I've been told to give the new dosage of Gaviscon a go for about a week. If nothing changes I'm going to ask for the milk to be changed to Neonate/the other one - can't remember the other one's name 🙈.

Hopefully they listen to me, I don't think they will but I'm just going to have to keep going back I suppose. The Pepti 1 was prescribed by an out of hours doctor who I spoke to on a Saturday after calling 111 because she was crying hysterically and kept bringing up her milk. It's been a long 9 weeks - not that I would change her for the world. I know this time will fly by and she'll be at school before I know it but currently it feels like everything is on hold and I'm stuck. I do love and adore her though, I just wish I could help her better and in turn help myself be a better mum to her by feeling somewhat rested

@BakedBeansMum thank you for the lovely message. It means a lot.

Yep, I've reclined the head of her crib, sounds like you've experienced an awful few months too. What exactly do Ostepaths do? Does it still work if baby has a CMPA?

X

We only saw the osteopath a few times but her reflux/digestive issues certainly lessened. The idea is apparently that they help babies who’ve had difficult deliveries which has caused stress for them and led to discomfort and difficulties feeding in the newborn stage. It won’t cure the CMPA but could be worth getting in touch with one to see if it could help ease things for your little one generally and make her more comfortable. Where are you based? I can send details of the one I saw if you’re in the SE by any chance?!

You will get through this but I completely understand how alone you must feel with it all and also how it makes you question whether you are doing things right or if you could be doing things better. Just know that your love is the main thing she needs right now and that that will be helping her feel safe and comforted. Obviously, trying to find the best solution to the CMPA will help too but please just remember that your love and cuddles count hugely too!

My DD is a toddler now so it’s a fair way in the past and you’d never know they’d been any difficulties now, but don’t beat yourself up for feeling anxious about this time or like it’ll fly and you shouldn’t be making a fuss or anything, how you feel now is completely valid. I spent too long trying to say to myself that I should just get over it, it wasn’t that difficult, I should be a better mum etc, but in reality, of course I was right to be worried, it was hard and I was being as good a mum as I could be. You will be too! You’ve got this!

@NewYearNewCalendar thank you so much for your helpful response. I've just looked up the guidelines for my local area and I feel more confident in approaching my GP as I feel like I'm armed with the correct information and procedures that should be followed when dealing with a (suspected) CMPA. I've also started keeping a diary of her symptoms to take to the GP when I next go in, to show the frequency of symptoms.

I've not got much support as my family live down south (but they've had a lot going on as my dad is currently in hospital with Sepsis) and I'm not on good terms with my partner's immediate family. Will look into asking extended members of his family to help - as much as it hurts my pride to admit this, but I do need the help.

Hi OP, I don't have much advice as such, but felt I had to reply as my DD was very similar to yours. It will get better soon, and you will be so proud of yourself for getting through what is an unbelievably tough time that many people (including health professionals) don't understand. I second previous posters who have suggested getting a completely dairy free milk (think there's one called Alfamino?) it's very thin so combine with a thickener (I think it's called Carobel) if you can. When I look back at that period of my life it upsets me a lot and I'm still too traumatised to try for another, but it made me a stronger person. I honestly think of you can deal with a difficult new born with little support you will get through most things. (as cheesey as that sounds!) Also, I like to think that having such a tough post natal period and newborn made me really appreciate and enjoy the toddler and pre school stage. It will only get easier and much much more enjoyable. Good luck x

Mine is almost 8months now but we had this it was so hard. Wouldn't drink milk with gaviscon or take omeprazole. The only thing that helped was baby wearing. Sooòo much calmer in the baby sling. Then suddenly realised the crying and fussing stopped. I'm not even sure when it happened but suddenly it was smiles, giggles and babbling. It was like a cloud had lifted. It will get better and you aren't failing. Try a sling if you haven't already. Baby has been in their own room since 6 months and pretty much sleeps through now. It's like a different child!

I’m glad, the prescribing guidelines are so helpful if faced with an unhelpful GP! Unfortunately it’s one of those things they’re often undereducated about.

You’re really going through it with your dad so sick too. I hope he gets better soon. Definitely ask your partner’s family, this isn’t something that is reasonable for one person or couple to deal with alone. Be really clear: “please can you come and hold the baby so I can nap”!

It does get better! Once I got mine on the right formula things were so much better. You’re right in the trenches now but you will get past it.

Had an awful night - my LO woke up around every 1-1.5 hours last night. Been really struggling, she's just constantly restless. I've messaged the HV and said I believe she needs the milk free of cows milk protein.

I've included photos of the spit up from just one feed. I've sent these to the HV too and the fact she's had an upset stomach for days is quite concerning too. Hope I get some help and she gets prescribed the milk free of cows milk protein

This is some of what I mentioned to the HV 'Her symptoms seem to be getting worse and it’s becoming difficult in terms of how uncomfortable she is, she wakes up every 1.5 hours at night and cries, wants milk but refuses it at the same time. Cries through and after feeds. Then cries throughout the day too in pain. She arches her back in pain constantly, does not want to lie down at all, screams if she’s lying down. Even though I’ve reclined the crib she starts screaming and crying. She only really naps in the car seat which isn’t safe for night time naps, she’s been having loose stools for days now. She’s constantly restless and again, sounds wheezy. I believe she may need the other type of milk, the one that’s completely free of cows milk protein. I’ve tried Gaviscon etc but there’s no change whatsoever and I’m struggling to see what else I can do. I keep her upright after feeds, I give her Infacol and Gripe Water for the pain related symptoms, I’ve stopped using the Perfect Prep Machine (Tomee Tippee) for 1.5 months now - incase that’s caused any of her stomach issues. I understand that I’m a new parent and I may be worrying about reflux which might be normal but I’m sure this isn’t just that. Currently surviving on waking up every hour or so and I guess that’s not good for me either. I went to see the GP the other day who upped her Gaviscon dosage but I strongly believe now that she needs the Cows Milk free formula'

As well as the neocate or nutramigen ask for omeprazole. It's stronger and works slightly differently to gaviscon. U are definitely not failing your little one. The ignorant GP/nurses etc are the ones letting many mums down. Keep pushing and let them know you won't keep up with the milk/gaviscon as it's not helping at all.

You need an amino acid formula and omeprazole. Full stop.

Go to battle for your LO. Its a reasonable request as you have spent weeks trying the lower level options.

@SeaToSki Thank you for your response. Yes, hopefully I get somewhere with this.

The GP's all look at me with the 'oh you're just a first time parent' kind of look. Before proceeding to ask me if this is my first and then telling me that reflux is normal in babies due to their immature digestive systems. Although this is my first baby, I've helped raise my nephew and been around other babies and I can tell that these symptoms (to this degree) are not normal. Hopefully someone (anyone) takes me seriously! I guess it all comes down to the fact that the milk free of any cows milk proteins are extremely expensive - but I firmly believe my LO has a medical need to be prescribed them.

@Soberfutures Thank you for your response. I did ask for Omeprazole at her appointment on Monday and the GP said I want to try and increase the dosage of Gaviscon first. My LO has decreased the amount of milk she drinks per feed from 3.5 - 3oz to now 1-2oz. Although she had been gaining weight previously, she would still want to drink her milk. But now she refuses it and cries and when she does drink some she just spits a lot of it back up. But will definitely ask for Omeprazole too

Ah I'm so sorry you're battling with the doctors over this. I was lucky with DD2 as DD1 was unable to have dairy and as soon as DD2 presented with the same symptoms I spoke with the doctor and they immediately referred to a dietician. I was breastfeeding so cut out dairy, when the dietician called me, she agreed it was probably CMPA based on family history of allergies etc and also advised to cut out soya, as we were combi feeding we were prescribed neocate and gaviscon, prior to this we had been given nutriomigen I think its called and she used to just bring up the whole feed. The improvement with her skin was quick, within two weeks, nappies and tummy took nearer to four weeks, and with the reflux we kept her upright for 40 mins after a feed and kept the crib tilted. We stopped Gaviscon when she turned 1, she still has congestion, but we are assuming other allergies at play as with DH and her sister. Have they done a dietician referral? Your doing amazingly, none of this is your fault

I hope things get better for you soon.

My cmpa baby was very sensitive and had awful reflux. As others said amino acid formula and omoprazole should be the next steps. My baby spent a lot of time in a sling. I remember going to the GP at a few weeks old and being told, don't worry he'll probably outgrow the reflux by six weeks. He's 4 and still suffers but it's much more manageable.

@annlee3817 nope. No referral to the dietician yet. The HV did say she would refer her, but she hasn't yet.

In terms of the milk, did your LO still put on weight as (s)he would if they were on 'normal' formula? Does the hydrolysed formula contain everything it should to still give baby all the nutrients she needs?

Sorry to hear about your experience too. It's shocking how common CMPA has become. Glad to hear it provided some relief for your LO x

Yes she gained weight on the neocate, it has everything a baby needs as far as nutrients

Just a quick update, I spoke to a GP today who was a lot more understanding.

The plan is to startup LO on Omeprazole as Gaviscon is clearly not working for her. He said a referral to the paediatric team has been made. He said he'd like to see how we get on with the Aptamil Pepti milk but with Omeprazole in the mix too. He said for a lot of kids with these symptoms Omeprazole alongside the milk does make a difference. He mentioned that when I do finally see the paediatric doctors, I can then also say I've tried Omeprazole and ask for Neonate. He mentioned that he's not dismissing my concerns but having not yet tried Omeprazole the paediatric team would be reluctant to prescribe another formula. At least that way I can say that I've tried that too.

My younger one was just the same. Her consultant, when we eventually got one, said there was no doubt about the cmpa diagnosis. The noises they make at night are horrific at times, aren't they? She needed Omeprazole and Neocate. It is common to trial the one before introducing the other. Otherwise you can end up not knowing the true underlying problem. We actually went to Neocate first which helped a very great deal but the reflux continued and I asked to be referred to the paediatric assessment unit and directly asked them to prescribe Omeprazole so that she could start having some sleep and put on some weight. I said I understood the reasoning but felt we had run out of time and I felt it was no longer in her best interests to wait on the Neocate for three weeks. The Paeds doctor agreed luckily. Incidentally her consultant a few months later said she thought it didn't particularly matter about starting Neocate and Omeorazole together as these babies so often have both issues and the reflux needs treating whatever or they can't deal with ANY milk...

I'm in Gloucestershire and here the GP can refer you to the paediatric assessment unit and you then go straight in that day. Half the GPs don't even know it exists so I would ask your GP if there is such a thing.

My girl has just turned one and we're still off the dairy (don't 'challenge' the allergy if you don't think its in your daughter's best interests. Its not even advised in most trusts now. You can always say you did it...) as she's continuously got bugs from nursery but she is fat and happy and you would never know what she went through.

Anyway, that's my essay. I hope your little one gets whatever she needs soon - you are doung the best thing you can in this situation, which is to advocate for her despite patronising doctors.