32 week preemie, silent reflux, CMPA why is my baby never happy when awake?

[mummadav]

Hi, I had my second daughter via emergency c section in December at 32 weeks gestation due to a placental abruption following a horrendous long battle with Hyperemisis in my pregnancy. She is now 13 weeks/ 5 weeks corrected.

My daughter spent 4 weeks in NICU and was diagnosed with silent reflux whilst in hospital. She was having apnea’s and bradycardia’s as a result of the silent reflux. Safe to say the whole experience has been rather traumatising.

She is on Carobel thickener and the max dose of omeprazole for her weight. She was 4lbs 13oz when born which is pretty amazing considering she was 8 weeks prem. She had always gained weight well but noticed some signs of possible CMPA. GP prescribed Neocate which she has been on for 6 weeks now and she seems much better in terms of not being so distressed when feeding.

My question is, has anyone else had experiences with their babies being so unhappy? She cries when she’s awake, she’s never happy in her car seat, mamaroo chair, buggy, play mat. She literally moans and cries every second she’s awake. Our paediatric consultant said she’s obviously just a fussy baby. But I’m absolutely exhausted. I’ve got a 4 year old too who wants my attention and I feel so guilty about not giving her my time as her sister just screams when she’s put down.

HELP!

Sounds just like my twins. Born at 33 weeks. They were treated as reflux for the first 6 months. On gaviscon, Omeprazole and carobel. But were constantly crying and unsettled. At 5.5 months they stopped feeding (they were combi fed but wouldn't take bottle or breast). At this point dietician treated as CMPA. The first bottle of Cmpa formula bottle I gave twin 2 she polished off her bottle them had her sisters bottle too. Within 2-3 weeks they were different babies.

In terms of the Cmpa formula if she is still having some difficulties there are different levels of processed formula so if not 100% better might be worth trying a different type??

You will get through this but I know how hard it is

She was on Aptamil Pepti for a couple of weeks which I believe still has cows milk protein in, but it’s just broken down more. She was still very unsettled on that so we tried Neocate. I am right in thinking there is no other formula to try as Neocate is the most hypoallergenic milk there is?

We have been referred to a dietician as her consultant was talking about weaning her early to help with the reflux.

My first born was so easy, I guess I was never going to be lucky enough to have 2 easy babies was I?

I'm not sure if there is a more hypoallergenic formula. But the dietician should be able to help with that. In terms of the reflux is it the GP or consultant that has said she is on the max dose of Omperzole? As we were told the twins were on max dose repeatedly by GP then when they checked with paeds they actually were nowhere near the max dose (I think GPs can only prescribed up to a certain dose but paeds can prescribe higher).

I tried early weaning with mine but they weren't ready, just wouldn't take anything. Hope it helps your little one.

My eldest was the golden child too. The twins are the complete opposites and still are now. They are 20 months and into everything!

She is on 3mg of Losec per kg. She’s 5kg so on 15mg. This was advised by the paeds at the hospital before we got discharged.

Im thinking about taking her off the Neocate as she was only on it for a trial and the gp wasn’t certain it was CMPA. Thinking of trying cow and gate anti reflux or perhaps aptamil anti reflux.

I just feel like there is no light at the end of the tunnel. I’m exhausted!!!

Hi op DS was 31 weeks and had a very similar journey to your little one. The things that helped:
Smaller feeds more often until they are over 10-12 pounds and the stomach can tolerate more volume.
A baby carrier - he only stopped crying when in contact with us. He wouldn’t go down at all until
much later on.
Co-sleeping - he still won’t sleep without contact at 2.5 years. So I’m not sure if this is good or bad idea.
Keeping him upright as much as possible.
We stopped the carobel/thickener as we thought it was giving him terrible stomach pain and it did improve things.
Ready made milk was much easier on his tummy than powder formula. Powder used to make him cry and cry - we think it was irritating his reflux and giving him wind.
We were on Nutriprem milk as they need the extra vitamins etc until 1 year old. You can get it on prescription from your GP/paed.

I just feel like there is no light at the end of the tunnel. I’m exhausted!!!

I bet you are

Fellow NICU mum here, our boy was born at 27+6 and is 3 days away from due date and we are experiencing the same. He has silent reflux and is on Nutriprem2 and carobel but he’s so uncomfortable and in pain he hates being laid on his back. We also have a 4 year old so it’s hard going. We have friends who changed over to Kendamil organic and instantly the reflux was eased, she was born at 33 weeks. I’ve been trying to research any potential risks of changing our boy to a standard formula so he can be relieved of the pain, it’s so hard to watch. We aren’t getting very many answers unfortunately

Hi @Emmiec92 thanks for your comment on my thread. I posted that back in March when I was in the trenches of postnatal depression following the traumatic pregnancy and premature birth to my daughter who screamed ALL DAY LONG. Here I am, with the moment happiest, most content little baby who is almost 10 months old. Congrats on your little one, I’m so sorry to hear you’re in the thick of it right now. I’m here to tell you it WILL get better. I ended up switched her to cow and gate anti reflux formula and weaning her off the omeprazole and as I truly felt she was better without it. She lived in the baby carrier all day so that I could get things done and was referred to my little ‘Velcro’ baby for some time. I visited an osteopath a couple of times, who I felt worked absolute wonders. Funnily enough i bumped into her earlier today in the local park and thanked her for helping me when I was in the thick of it. I found early weaning helped, not sure whether you have to get the go ahead from your consultant/health visitor for that. Hang on in there, you can do this. X