Thursday, 30 April 2015

Living with Reflux Babies


At first I had no idea what reflux was. 

When my daughter was born, I had no real idea about things that could make life more complicated when you have a newborn, because just having a newborn, when you've barely even touched a baby before, is pretty complicated in itself. 

But with Miss S, it became pretty clear, pretty quickly that there was something amiss. Not something wrong, because she wasn't sick, she didn't have real problems, but something was definitely amiss. 

She projectile vomited every single feed. Literally every single one. I have photographs of me feeding her and I'm wrapped up in towels so tightly you'd think I was sitting in a snow storm. She would start to feed, scream a lot and then vomit everything back up. Then she'd demand another bottle, as though she'd never been fed.

She was also impossible to wind, had constant hiccups and a constant cough that just wouldn't go away.  

At first doctors thought I was exaggerating. But when the paediatrician watched her vomit back 130 mls of formula, when she was a month old, I think he realised that I wasn't talking about a bit of spit up. 

Thankfully for us, as new parents, Miss S had a relatively easy fix. We propped her cot, we gave her small doses of gaviscon in each bottle and we kept her upright after a feed, and by three months the reflux had vanished. 

It appears that she had the relatively common reflux where the valve on the oesophagus hadn't fully developed and so it wasn't strong enough to prevent the milk from coming back up again. 

The difficulty in winding her continued and she needed infacol in her bottles until she was well over a year old, or she would get hiccups after every feed, and they would last for at least thirty minutes. Every time she teethed she would get another round of wind that was impossible to shift, even when she was crawling, walking and even running. 

in the grand scheme of things, this was a relatively simple problem to live with, and, as we were to learn later, it was just the warm up. 


When our son was born, it took me approximately four hours to realise he also had reflux. When Gary had gone home to Miss S, and I was alone in the hospital room, I was able to really watch Mister L. To watch when he got hiccups ten minutes after every feed, and how he vomited back a small amount of milk about an hour after each feed, along with screaming in pain.

It wasn't the same projectile vomiting, but it was there. It was more than a bit of spit up, and it was half digested milk that had sat in his stomach for a long time.

What I didn't realise was how different his reflux would be. That it wouldn't be over in three months, and that I'd still be working with him on it as he turned a year old. It eventually dawned on me that he had silent reflux. As soon as we moved him onto the lactose free formula the vomiting stopped, but the pain did not.

We've been relatively lucky in terms of medication, in that gaviscon seems to work well for both of my children. Adding in anything else seems to make Mister L's reflux worse. So at least he's been on a relatively small amount of medication given he's now been on it for almost a year.

But his reflux flares regularly. Just as we are reducing down the medication and phasing it out, something else will happen and we'll have to go right back up to the maximum dose again, get it under control, and then start the long stepping down process.

Every time he gets a bug, the vomiting starts again. He usually wakes at 3am demanding a feed and then vomits it all back up as soon as you put him down in bed. So we spent weeks out of bed, changing the bedding and the sleeping bag and him and then resettling him back to sleep.

When he teethes he gets horrendous wind. He won't eat enough in the day, but then when he wakes for a make up feed at night, you have to prop him up for an hour or more before he gets all the wind up and will finally let you put him down and get back into your own bed.

The hiccups also reappear with force when he is teething. They last for hours on end and as soon as they stop, they pretty much start up again.

Sometimes I've wished for an easy feeder, a baby who just eats, winds and gets on with it. Or I wish for another Miss S, a simple reflux case which disappears at three months and doesn't affect her that much.

But in reality, this is part and parcel of who Mister L is and how our bond has grown. I feel like MissvS's reflux prepared me for Mister L. Prepared me to spot it quickly, to know what the problem is, and to alter the way that I mange it accordingly.

I don't believe for one minute I would be as patient if this was my first reflux baby. I haven't always been patient, it's hard to be at 3am when you've slipped back into bed for the fifth time, just for Mister L to cry out again. But I do understand what the problem is and, over time, I've learned how to respond to it. I know to prop him up in the middle of the night, even when I worry it will wake him further. I know to make sure there is gaviscon in his night bottle because I'll know about it if I don't.

I know that I'm lucky that it's "just" reflux. That my babies are healthy and happy. That a bit of night feeding, or a bit of vomit is all that I've got to deal with. I just wish it wouldn't always be sent to try me at 3am! I'm not good with no sleep, and vomiting and screaming at 3am definitely does not help.

For those of you with new babies, trust your instincts. I knew that there was a hiccup with both of mine, and I was dismissed at first, but I was right. It's really hard for doctors to see what you see, when you are in a consultation room and your baby is mesmerised by the light changes and all the people.

Keep on talking, reading, researching and you'll find the answer. You know your baby best, and you know if there is a problem.