Severe reflux

[Preemiebaby]

Preemie baby born 9 weeks early! No medical issues apart from an absolute mare with feeding and the joys of acid reflux!!!!

Only issue in NICU = establishing feeds!

Been a sicky baby right from the start! Was on my breast milk but kept being sick nobody could understand why NICU consultants considered gaviscon but decided against it and chose to add in fortifier and DD kept feeds down a lot better with small spit ups! As she got bigger so did spit ups but was manageable I watched what I ate and drank but made no difference really!

I was pumping every 3 hours and DD was drinking every hour at some points she had severe IUGR and was the size of a 26 weeker and only 2.2 lbs born so had a lot of catching up to do very hungry baby! Exhaustion got to me and once she was 40 weeks I made the decision to put her onto formula which had to be nutriprem 2 due to her low weight and that’s when the projectile vomiting started and very sleepless nights😁🙂

vomiting was upto 6 times a day at its worst went to GP standard tummy check and gaviscon provided x2 sachets a day I started on and things got better!

DD was on 9th percentile (born on 2nd) hospital didn’t want her on nutriprem long planned to take off on 10th percentile and when reflux settled

vomiting increased went to 4 sachets a day and settled again! Got weigh day and gained well but dropped back to 2nd percentile on growth chart!

phoned GP who told me there was no more medicine for reflux! I said I wasn’t stupid and listed what there was he just went oh yeah and still mucked up the prescription and pharmacist requested omeprazole for me. Phoned arabellas NICU consultant who agreed omeprazole and full dose gaviscon x6 a day couldn’t believe how much she’d been being sick and that I was having to feed 2 hourly she also got the NICU dietician to phone me for support who suggested looking at allergies if omeprazole didn’t work.

nightmare to get omeprazole into DD either spat out or made her sick! I was at my wits end by this point no support from partner (that’s a whole other issue) doing all the sleepless nights on my own DD would wake every hour sometimes not even sleep until 5am and pass out in exhaustion! Phoned HV said arabella starting to refuse np2 and im sat in Asda’s car park about to buy c&g anti reflux formula she told me no as arabella is on np2 (needs extra cals) got a dietitian to phone me gave us dairy free milk sma alfamino, DD hated the taste but she was the most settled I’d ever seen her after a feed! Thought we cracked it 12 hours later vomiting back it was like a fountain coming out of her mouth tried it with gaviscon, carobel! No effect, tried to feed her back with np2 was now screaming at the bottle and refusing any milk so went to A&E waited for 4 hours for a consultant to tell me she’s a very difficult baby and we probably won’t find a solution 🤔 and he was more worried about me ..I think me standing at the reception desk sobbing saying I need help feeding my daughter had something to do with it ha! Basically offered a room for me 😂 to have help for the night but said no thanks

I thought sod it all! Sod np2 doing bugger all supposed to be high cal and we’re dropping percentiles so on the way home we went to Tesco’s I bought c&g anti reflux and we’ve only been sick once!

poor DD is traumatised still reluctant at the bottle sometimes I’m using MAMs she will only take size 1 teat I tried size 2 due to c&g being thicker but that’s when she vomited
NICU consultant worked out dose for omeprazole turns out DD can have 12mls not the 5.8mls gp prescribed 🙂 re done a prescription for me but not had time to pick it up yet last night I got 10mls into DD (mixed in with paracetamol) she slept for 5 hours! Not sure if it’s omeprazole or the formula or a combination of both! We are now having 4 ounces every 4 hours it’s an absolute dream but feel like it’s too good to be true 😂😵‍💫

not sure why I’m posting this drag of a story, just want to see if anyone else has been through this!? I’ve spent hours reading through forums and searching the internet for tips and tricks but what’s been everyone’s top trick? And when did your baby grow out of reflux?

seeing how settled DD was after the allergy milk makes me think there is either a intolerance/sensitivity somewhere but with how sever her reflux is I doubt I’ll ever find a formula to treat both she still uncomfortable feeding but a lot better ..I’m really hoping c&g stay down is the answer but she’s still gagging sometimes maybe it’ll take a while for omeprazole and her tummy to heal ..who knows in the awful world of reflux.

Oh OP, I'm so glad you've finally been given something that works. My DC had reflux and getting Drs to do anything was an absolute battle. I had a GP tell me that infant reflux didn't exist until Gaviscon decided it did. Another told me to give DC calpol 20 minutes before I thought he might need it when I told him my son would scream in pain...

The whole thing was infuriating for me and your experience sounds much more difficult still.

I went to the Dr's every week from weeks 2 to 10 to ask for help and saw 3 different Drs. Nothing.

Another mum I'd met a few times gave me her leftover ranitidine to try when my son was about 10 weeks old because she'd been through the same battle. Instant change in my son. My brother lived in a country where it could be bought over the counter so he got me some more.

I don't suppose I'll have any tips that could help you as it sounds like you've done an amazing job working out for yourself what your baby needs. But I just wanted to post to say what an amazing mum you are fighting for what your baby needs. I hope things continue to improve for you both.

Thankyou so much for sharing your journey it’s so nice to know that I haven’t been alone in this and there’s others out there too!!

DD is 5 months next week (actual age not corrected) it’s been a very long battle!

I thought arabella was just a bad sleeper in the early days done everything! Bought lights, sleeping bags, new bed for her, countless white noise playing!

gp only prescribed 5.8 mls of omeprazole, arabellas neonatal consultant said she can have 12mls! I got 10 mls into her last night and she slept 12-5 and then 6-10 she’s never slept that long before! New does and new formula I think we are onto a winner

I don’t know what I was trying to get out of this post but it’s been such a long and lonely journey it’s nice to speak to someone who understands

xxxx

Ah that's an amazing night's sleep! I'm so glad things are looking better. Awful for both her and you that it took 5 months to get the support you needed.

I remember it being such a difficult time. I wanted to breastfeed but stopped after 7 weeks as it was painful for both of us. No doubt because of the reflux. I should've stopped weeks earlier to be honest. Poor DS was screaming and clawing away at my chest in pain at every feed. I switched to formula at 8 weeks, tried gaviscon in it at first and then switched to a special formula (I can't remember which one now) and my son also slept well on it. He'd sort of gurgled his way through broken sleep before and like you I tried all sorts... I often ended up putting him in his car seat at some point in the night, sleeping more upright helped somewhat. But yeah, tried all sorts, was very stressful, but the ranitidine at 10 weeks was the saviour. That said, he was always a 'sicky' baby even with that, but a much happier baby and obviously not in as much pain.

Hopefully this is it for you now with the omeprazole and new formula. Sounds like it could be. x

Yeah this was use (but full term baby, I was bf so cut dairy and soya out. That plus gaviscon and rinitidine got ds on a fairly steady diet. His was silent reflux, never lost weight so didn't have that to worry about. But yeah I did the research, joined a cmpa group on Facebook and told dr what he needed. We tried neocate formula (it smelt like rotting fish) he wouldn't really take it tho so I just carried on bf and expressing.