Re:Re:Reflux

It seems to me there’s one of two clubs you join when you have a baby. It’s a real divider. It may not be spoken of, but if you’re on my side of the divide you’ll recognise it. You’ll recognise it in the nappy bag overstuffed with muslins and wipes. The five changes of outfit, for them not you. You don’t even know what you’re wearing as long as it goes in the wash. The harrowed eyes ringed dark by lack of sleep, lack of decent naps. The odd stench of gone off milk and stomach acid. The odd white stains littering every fabric surrounding the child, their pram, their clothes, your clothes. The baby’s not even in the pram, they’re being carried upright and they’re probably still crying. And that’s out of the house.

In the house you’d see a mother prepared to sleep on the wet bit of bed. The spray to clean, the spray to ‘freshen’ smells. Biceps the Incredible Hulk would be proud of from holding the child vertical. The palms that never stop tapping, so used are they to rubbing and tapping to wind. Not that it’s ever enough, it still comes up. Out of left field. The splash on the floor over your shoulder. The bra full down the front. Into pockets, trouser turn ups, between sofa cushions. Crevices that it’ll never come out of.

In my club, you may just be passing through for six months. You may know the screaming but not why. You may be a long timer like us. You may even have to deal with some terrible side effects that need serious intervention. But like life, it’s all bloody subjective. All you know is you’re in the reflux gang and it’s shit. Truly shit. You wouldn’t pick this team. You have to back it if it’s yours, but honestly, you’ve had enough of it’s behaviour.

When Rufus was born, his belly was disproportionate. A barrel with twigs for arms and legs. His intestines were so swollen they pushed forward, ribbing it like a pumpkin. Full of meconium, full of gas, they weren’t in a good shape. So many suspected episodes of necrotising enterocolitis it was a weekly word in our ever building dictionary of medical terminology. Thankfully it never became more than a suspicion, although there was one time they ‘think’ he had it… Never proven, never dispelled. And there was the diagnosis of pyloric stenosis. Cancelled on the day of operation because on reflection that wasn’t it.

Abs of steel

Why did they think this? Because Rufus vomited, a lot. Everything. Even some stuff you weren’t sure from whence it came. My bulimic baby would tolerate feeds, and by god he tried the entire smorgasbord- boob juice, boob juice with added extras, formulas galore. But only for a few days. Then it would start, and back on IV fluids he would go. His already none existent bum cheeks were burned down to the quick with diarrhoea. And nobody knew why. He was on more medicines than he was days old. Lying on his back in the incubator it would be akin to a whale’s blowhole, drenching himself in all the nasogastric tube had carefully put in. One ml an hour, for weeks. That’s all he could take, and still it reappeared.

He’d give the old bottle a good go, but he became more and more malnourished. He’d tasted too much of his own stomach contents in his own short life. Too many formulas that were ‘pre-digested’. Smelt like they were, too. He’d cried for too long about being hungry but we were all powerless against the beast that was his digestion. In his world, he might just give up on that. It was only going to burn his throat an hour later.

I don’t really remember when he started tolerating milk full time, we’d become so used to not counting our chickens. They were VERY free range. But slowly but surely it happened. Three months of not putting on weight, mostly losing it and all of a sudden he was making the scales a flutter. It felt like he thought 2011 was his time, I remember recording him hit 5lbs on the 1st January. 24 days later he joined us in the homestead. No nursing staff to change his clothes and sheets. Just Wolf and I and our naive exuberance- he was home! At last! Come and puke across our living room baby!

And he did. And he still does. He didn’t ever fancy food much, so his lifeline (and ours after having to pass a naso gastric tube daily due to our five fingered felon) is his PEG gastrostomy. He’s a gastrostomy addict, he can’t see that it’s the main route of evil. If he just ate a bit more, stopped pushing it away, shaking his head in abject refusal, he wouldn’t be so constantly full of liquid. Which sloshes around, threatens to make a reappearance. Doesn’t let him sleep for hours on end. He has to take other drugs just for the side effects, vitamins, nutrients, reflux medication. It may be conjecture. Could it be his appetite would never match his calorie requirements? We can’t go cold turkey and find out. I’m his feeder, his pusher.

If I smear this all around my mouth and then throw it behind me, that’ll do right?!

Aren’t mother’s supposed to be feeders, on any level. Emotionally any reluctance to feed is soul destroying. Over read on a local mother’s Facebook page; “has anyone got any advice? My 18 month old will only eat (insert the entire contents of Tesco here), they just seem so off their food. I’m worried about their weight” But who am I to scoff? I don’t think the suggestion of a gastrostomy would help. Because, and excuse me for repeating myself like reflux, it’s all so bloody subjective.

So here’s my ode to mothers in my team of whom reflux has and still blights your life, to mothers who may have been there on holiday, to those who never know when it’ll get better. And here’s the bitch, to those of you obsessing that your actions and decisions may be making it worse, but it’s the only solution. And here’s to babyreflux.co.uk, thank f**k for you guys.

 

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8 thoughts on “Re:Re:Reflux

  1. I have horrible memories of watching Freddie laying choking on his on vomit, it would just keep coming & coming, shooting out of his nose & his mouth. Horrendous amounts of sick. Poor dude would cry so much. It was so forceful that his ng tube would always come up with it. Every time we left the house he would be sick, everytime he went to bed he would be sick, everytime we did anything he would be sick.
    We are lucky tho and it’s been ALOT better lately. It’s still there but the meds are working for us right now.

    1. It’s just so predictably unpredictable!! Glad to hear Freddie’s is getting better. We have better weeks than others, then some little virus or a new tooth, and bam, back in team reflux xxx

  2. I have the fortune to havsooner had the occasional reflux with my daughter so I was totally unaware how bad it can be. Your blog highlights your experiences very well and it certainly taught me a thing or two to be thankful for. I really hope, from the bottom of my heart, that things do improve soon for you both and thank you for sharing that with me.
    Many hugs and love to you both.

  3. I HATE REFLUX!!!! Out of all of the struggles my daughter faces, I would say on her behalf that reflux is the most inconvenient! Now we get the stares, a nearly 4 year old, sitting there being sick is normally a worry. They are ill, have a contagious bug! People look concerned, disgraced that I’ve obviously taken my sick child out! But no it’s just the norm and probably will be for the forseeable future! Luckily my little lady loves her food, however eat too much then the reflux is worse, but being underweight she needs the calories! Once again as a SWAN mummy, I can’t win, so we do what makes her happy!!!!

    1. We have that every time we go swimming! He always pukes and retches as he forgets to hold his breath, and I’m telling the guards he’s got a sensitive gag! Let’s hope the next ones are in the other club! X

  4. I holidayed where you live. My now 12 year old (non-Swan), had terrible reflux throughout babyhood which they never found a cause for. It wasn’t as serious as Rufus’s by any stretch of the imagination, but I recognise myself in your description of the mother with a reflux child. I remember the looks of combined horror and amazement when she projectile vomited in public, clear across the room! She was also, to quote my Health Visitor, “The most difficult child to wean that I have ever seen”. We got there eventually.

    So I join you in your ode to reflux mothers, cheers to one and all, and keep up the good work those still living there 🙂

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