PLEASE help me - prem baby with reflux - at wits end

[StormInaCCup]

I haven't been on MN for ages. I have a baby who was born 12 weeks premature. He spent 8 weeks in intensive and special care and has been home for 6 weeks - he is 2 weeks old now going by his corrected age and on paper he is doing well - he weighs about 7lb compared to the tiny 2lb 12oz he was when born. He has always had a problem with reflux and was prescribed Domperidone, Omeprazole and Infant Gaviscon powder when he came home. He had perhaps a couple of weeks where he wasn't too bad, but for the majority of the time it has been hell. Feeding times are a huge battle. He starts his bottle (EBM mixed with gaviscon) well, but half way through starts writhing and crying - he is still hungry though so has a couple more sucks then cries again, this repeats until he is too exhausted or full enough to stop. He is very uncomfortable when being winded too - it upsets me to have to do it, but I know that if I leave him full of wind he will be worse. I have tried winding him after every ounce (rubbing, not patting) but this doesn't help, now I let him drink until he starts to get uncomfortable, then wind him. He is usually sick when he is winded, but a mouthful at most.

Feeding is a problem all the time, but mostly at night as I can keep him upright for most of the day. After night feeds I have to keep him upright on my chest for at least 30 minutes (or longer) or he will be sick straight away, even with the gaviscon. He will writhe about moaning for much of this time but if I am lucky he will drop off to sleep and I can try and put him down to sleep in his moses basket (inclined using a foam wedge and towels). More often than not after a short time (about 20 -30 minutes) he will throw up another mouthful of feed, usually through his nose, which will wake him and he will start crying and take a long time to settle, before the cycle of me holding him, putting down, being sick starts again. He feeds roughly every 4 hours so I am lucky if I can get an hour of sleep myself before he needs feeding again.

I am totally exhausted and at my wits end. I feel like I have flu. It was 30 degrees here yesterday and I was in a jumper shivering. My husband was up at 4am to go to a meeting at the other end of the country (he sleeps in the spare room mid-week as he couldn't do the miles he does safely with no sleep) so my mum and stepdad came and took my son to their house so I could sleep. I have slept for about 19 hours straight and am about to go and pick him up. I miss him and love him so much but I am dreading having him home again. I feel like I can't cope. I don't know what to do any more. He has had such a rough start to life and I feel like I am letting him down by not being able to help him. I am crying typing this.

Does anyone have any suggestions on what I can do - or do differently? I have a doctors appointment this evening at 7pm and I am going to explain everything and take my mum with me for support. He is a good doctor and has previously rung SCBU to speak to my son's consultant about the previous medication so I know he understands the issue and is keen to help. I am terrified in case he says that there's nothing further to be done, especially since my son is gaining weight well (also I think the 3 meds he is on are supposed to be the 'gold standard' for treating GERD?) It's not the amount that he is sick that is the problem IYSWIM, but the frequency, and he is uncomfortable at least 70/80% of the time.

I need to go and pick him up now but will come back on later to see if anyone has any words of wisdom.

Oh poor you and poor baby. DS had reflux (not nearly as bad as you describe though) - the two main things that worked for him were SMA Staydown formula (Cow & Gate do their Comfort formula too which DD had) served in Dr Brown bottles (a faff to clean but SO worth it) and a few visits to a Cranial Osteopath - I know some people are sceptical but he made a difference to DS after the first visit. If you can find one in your area they might try to squeeze him in.

Try to stop giving yourself a hard time too - you are not in any way letting him down and it is totally normal to want a break. Your experience of having a newborn has not gone to plan and you need to allow yourself time to process that.
Have you met any other new Mums?

Thanks PD - I will look into a cranial osteopath. Forgot to mention that we already use Dr Brown bottles after I read that they were the best for wind. DS is going to have to go onto formula now as I have used up all of the breast milk I expressed for him (I had enough stashed to take us up to now!) so will ask the doctor about staydown and comfort formulas. Are they thickened milks and if so will I still be able to use the Infant Gaviscon?

Just to say that although DS is still sick a lot on his meds, without them you can hear the milk coming back constantly. It sounds like he is gargling with it, poor love.

My ds had reflux, and we found that the Gaviscon helped a little, but he had to be fed in an upright position. Even for his night feeds, we had to put his bouncy chair on our bed. We also used the incline and the towels in the cot, and we swaddled him very tightly.

I'm sure you've done all this, but keep going. It doesn't last forever and is soon forgotten. Honest.

PD - I don't know too many new mums, although am due to start a 6 week course of infant massage etc next week. I had a full NCT course booked but I had him before it even started!

Luckily I met a couple of really lovely mums with prem babies whilst DS was in special care. One in particular lives a 10 minute walk away from me and is really ace - she is having a lot of the same problems and is totally honest about how hard she's finding it.

I think that is the hardest things almost - everyone I know seems to be finding it a doddle. One of my friends who had a full term baby 2 weeks before DS's unexpected arrival texted me to say that her daugher is now sleeping through (up to 14 hours a night!!) and in her own room. Oh and she's also just started laughing. Nice to know.

I know that she does not know the full extent of the problems we're dealing with but I could have done without that message. At that point I had gone 24+ hours without sleep and poor DS was writhing around with a look of pure misery on his face.

It's a long time ago but my two prem babies were very similar. Dd1 had it so bad before they diagnosed her it had almost burned through her windwipe. :(
They just had Gaviscon mixed with their milk (either before by oral syringe or mixed in a bottle) and I kept them constantly propped up on something. At night they slept in their car seats inside their cots. It was pure torture for months.

It will get better when he's on solids and by the time he's 15 months it will be a distant memory. Mine are 12 years old now and have gone from 2lb summat tinies to fine, strapping pre-teens. Keep talking to your doctor but remember it will get better.

You are having a horrible time and are doing everything you possibly can for your son. Hopefully your doctor can give you some more help this evening.

DS2 was a prem baby with reflux (nowhere near as bad as you have described) but I well remember the feelings that come with only a little snatched sleep. Everything looks and feels worse then.

DS2 just got bigger once he was out of hospital and he grew out of it quite quickly. I hope it's the same for you.

Is there any way your DH could do a late evening feed so you could grab some shut eye then? Or could your mum have DS in the morning so you know you can get some sleep then?

Thanks PJ - we feed him bolt upright already, it does make a difference you're right.

Those of you who have had a child with bad reflux - can you tell me when roughly you started to notice an improvement. I know that there are no 'quick fixes' and that he will grow out of it eventually but that's not much of a comfort when you're not sure if eventually means weeks, months or years.

It definitely improved when he started on solids and didn't need as much milk. Even now if he drinks a lot I can hear it sloshing about in his stomach, and he is 18mo.

My dd born 7 weeks early had similar to what you describe and was on the same 3 meds. We were also prescribed Nutramigen hypoallergenic formula as dd had suspected dairy intolerance. Could you cut the dairy from your diet and see if this helps ( assuming you are fully BF). Also I bought a sling and wore it round the house so dd was upright as much as possible. It sounds like you are doing everything you can, I remember very well how awful the long nights of endless crying were, wrestling dd trying to feed her and being constantly covered in sick so you have all my sympathy and a hug too. My dd is now 9 months and improved almost as soon as we started weaning her. It does get better I promise, just hang in there and don't try to put a brave face on it - let those around you know how hard things are for you so that hopefully they will shut up about their (allegedly) sleeping through the night babies

Oh that sounds awful, poor you. My ds was prem and had silent reflux, he wasn't sick much but swallowed it back down (sounds like yours might be the same) and managed to give himself pneumonia whilst in SCBU by inhaling the milk that had come up into his lungs. He only slept on his stomach nearly upright on me or dh (or in a sling) for about the first three months of his life, so I fully sympathise with the sleep deprivation. We propped the moses basket up so much we sometimes found him slumped at the bottom of it and he still wasn't very comfortable in it.

He was on gaviscon, ranitidine and domperidone, but they weren't a miracle cure. Ranitidine in particular is a very weight dependent drug, think domperidone is as well (not sure about omeprazole) so make sure the dose is adjusted as your ds grows. The good news is that ds was off all meds by 4 months corrected and much improved. No trouble weaning etc.

Ignore your friend with the super sleeping baby - if it's any consolation my dc have never ever slept for 14 hours in their lives and dd (who was term and perfectly healthy) has only just started sleeping through at nearly 2 oh and dropped her nap at 20 months...

I also carried ds around in a sling a lot so he was upright as much as possible, I think it did help.

at baby Liege being slumped in the bottom of the Moses basket. This happened to us to, found dd all folded up in a ball at the bottom of her basket thanks to our over zealous basket tilting. What can I say, we were desperate and our understanding of 45 degree angles was limited at 3 in the morning.

I would second what wafflepuss says and look at milk protein allergy - all the symptons you say can be a sign of it, and it often follows with reflux babies that they have the milk protein allergy too.

Have you seen the Tucker Sling?

After the osteopathy kicked in and we changed formula, (about 10 weeks) DS was totally different. He was still very sicky until about a year old but we were just so used to it (and he had no problem gaining weight!!). Other people were particularly freaked when the milk came out of his nose but we hardly noticed.

My biggest concern was around 7 weeks when he seemed to inhale the sick and then appear to stop breathing - the CO told me not to put him on my shoulder but to gently hold him on his side in a horizontal position. I think that the best thing about the CO was the fact that, while he appeared to be doing nothing but rest his hands on DS's head and chest, he would answer loads of my questions and concerns - it was like a therapy session for me!

If omeprazole isn't working to relieve his pain (and is being given on an empty stomach at least 30 minutes prior to feed) I would also suspect either: omeprazole dose not high enough or; cow's milk protein intolerance. To test for the latter, you'll need to completely cut out cow's milk from your diet if EBF, and/ or get a hydrolysed formula if he's recieving any formula.

Sounds awful, really, really feel for you. Come back and update us.

Hi Storminacup, it seems impossible to imagine but things really will start to look up by about 3 months and even better by 6 months. I second the sling recommendation - my DD had silent reflux and screamed in pain for hours on end, but once I discovered the sling she at least got the comfort of being rocked to sleep bolt upright and I could get on with looking after my then 21 month old DS. Trying to think of other tips: for nappy changing, i used the fabric bath support from mothercare. Like a terry-towelling ridge that kept DD's head above body and soaked some of the milk up. I found Omeprazole suspension alot easier to administer than the Losec MUPS, so worth considering if you're not already using liquid form. Also, you just being really easy on yourself in every way possible: internet supermarket shops, a cleaner for even 2 hours a week (if feasible), accepting all offers of help, etc. You really need to do everything possible to counteract the emotional and physical stress you're bound to be under right now. Did you doctor mention Carobel for thickening feeds? I used this with EBM and, although it's a pain and can clog the teat if it's not fast-flowing enough, it did help a fair bit. Good luck!

Poor you and poor baby. I so remember the time when my DD was that age- she was term but had a reflux, so I remember that cycle of feeding-winding-throwing up-cleaning-sleeping for 10 minutes- and then it would start again. It was very, very, very hard, so don't think everyone else finds it easy- sometimes people just prefer to shy away... It did get so much better when DD was about 6 months old. She is still a very fussy eater (she is 2,6 now) but it's nothing compared to those first months.
My word of advice would be to get a sling- we had www.becobabycarrier.com/cat-1/butterfly-2 and a sling with the rings- somethinkg like this wearyourbaby.com/Default.aspx?tabid=88. They helped a lot- our DD would calm down instantly. Try to get out- I know, t's difficult with the reflux, but try to do it at least once every couple of days- somehow they are better when outside. And hang on in there- it does get better!