How reflux stole my baby

reflux

I have written before about our struggles with reflux. Max suffered terribly and was under a paediatrician until he was 17 months old. He took a cocktail of medications and was under almost constant review with regular weigh ins and health visitor checks. Finally at almost 1 and a half his reflux had stabilised and we were able to wean him off of medication and go out without several muslin cloths and full clothing changes. 

When Eliza was born I always knew reflux was a risk again – it does seem to run in families. For the first couple of days of her life she seemed to be OK – she kept her milk down, she slept a lot and she was content. But when we got home from hospital it came on fairly quickly. The sickness after each feed and for hours afterwards. The crying and arching of her back as the acid burnt her throat. The inconsolable sobbing if she was laid flat on her back. 

At least this time I knew the signs, and I was able to get her seen by the GP quickly. He agreed that she was suffering from reflux and prescribed infant Gaviscon. It reduced the volume of milk coming back up, but it didn’t do anything for the acid, and so very quickly Eliza was also placed on ranitidine – a medicine to reduce the acid in her stomach. We were also advised to weigh her regularly so they could make sure she wasn’t dropping down the centiles. 

Now this is all well and good but the weight thing does bother me somewhat. Of course it was important to monitor her weight but I did feel that they were too much and too frequent. It put too much pressure on me during those early days, and weigh in days were fraught with stress and tension. Watching the numbers on the scales through my fingers, and then being hit with that heart sinking feeling when they weren’t ‘enough’.

She lost 12% of her birth weight, which triggered alarm bells for the midwives, who wanted her readmitted that day. I begged for 48 hours grace. I knew my baby and I knew that she was slowly turning a corner. She had started to wake for feeds more frequently, she was taking more milk each time and she was becoming more alert in between – her body just needed time to catch up. When we went back 48 hours later the scales told a similar story and she had started to put weight back on. Despite the reflux I knew she was going to be OK. So she might have been ‘slow’ to put on weight, but she was feeding, she was producing enough wet and dirty nappies and she was putting on weight, albeit slowly.

Over the next few days and weeks we continued with our cocktail of medicines and the frequent feeding that comes with having a reflux baby – they either feed because they are hungry after throwing up the last feed, or they feed for comfort and to ease the burning acid in their throats. We knew about reflux, we had been here before and we had a very understanding GP. We changed her onto a lactose free formula and the improvement was massive. She was still sick, she was still unsettled at times, but it was nothing compared to how she had been before. And that’s where we are now – still managing the reflux, still on prescription formula and medications, but managing. We are hoping to see an improvement with careful weaning and hopefully reflux will be a thing of the past soon.

But reflux stole my baby again. It stole those first few precious days and weeks where I should have been in a newborn bubble, just me and her against the world. Instead I was pumping her full of medication, trailing to the hospital every few days, anxiously watching the scales with my fingers crossed behind my back, sobbing when the numbers didn’t add up. Hating the words ‘readmission’ and ‘feeding plan’, and feeling irrational rage towards the midwives and health visitors who made me feel I had failed my baby. 

My sensible head tells me that’s not true – I didn’t fail her. She’s now a happy, alert and active 4 month old. But deep down my heart tells me I failed another baby, and that will never go away. Reflux stole my baby.

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32 Comments

  1. October 28, 2015 / 8:13 pm

    So sorry you’ve had to go through this again. My son had severe allergies and eczema and I know exactly how you feel. And there is no better phrase than it stealing your baby x
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    • kate
      Author
      October 28, 2015 / 8:14 pm

      Thank you. It is so tough when things go wrong, and there is nothing worse than seeing little ones suffer is there? How is your son now?

  2. Rebecca Lis
    October 28, 2015 / 8:35 pm

    This is my fear when i have my 2nd on the 17th! We suffered terribly first time round with reflux and allergies, she’s 2 now and still unable to tolerate dairy or egg! Im hoping if it does happen i won’t have such a bad time trying to persuade midwife/hv/gp it wasn’t colic! Dreading it all to be honest !

    • kate
      Author
      October 30, 2015 / 4:51 pm

      Fingers crossed your second baby is reflux free. I know plenty of people who have had a second or third baby after a reflux baby and have been symptom free. xx

  3. October 28, 2015 / 8:40 pm

    I’m sorry you’ve had to go through this again Kate. Both my boys have mostly silent reflux and thankfully no issues with dairy so the weight thing hasn’t been a problem for us but the constant feeding, trying to find a position they can sleep comfortably in and having to give your baby medicines only really meant for adults are really difficult. Toby has only just stopped taking ranitidine last week at 27 months, I just hope that Gabe’s reflux doesn’t hang around as long. I hope Eliza improves with weaning too and you can start to enjoy her babyhood more x
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    • kate
      Author
      October 30, 2015 / 4:52 pm

      It’s just such an awful condition isn’t it? So glad to hear Toby is now off medication, and fingers crossed Gabe doesn’t suffer for long x

  4. October 28, 2015 / 8:46 pm

    It’s just so awful isn’t it? I was terrified the first time z threw up an entire feed, it came out of his nose and I thought I’d done something horribly wrong. It’s when I discovered reflux in babies. So sorry you’ve been through it multiple times, I didn’t realise it runs in families. I see bits of it with E but so far it’s not been as bad as it was with Z.

    • kate
      Author
      October 30, 2015 / 4:52 pm

      It really is. The amount they can bring up is incredible, and terrifying.

    • kate
      Author
      October 30, 2015 / 4:53 pm

      Thank you lovely lady xx

  5. October 29, 2015 / 6:54 am

    Oh Kate this breaks my heart to read. I am pretty sure that reflux played a huge part in my birth trauma with both Elsie and Luka and I know exactly how you feel. We were told that Luka needed tube feeding at 4 months old, which is the sole reason I stopped breastfeeding then. There was no way I was letting him back in that hospital. He grew out of it at around 3 years old but still has flare up bows. Reflux really is awful and it stole the early days with Elsie too. We are managing her condition ok, a lot better than luka’s, but she still has really bad days. And when I read silly articles that claim reflux is all the figment of a paranoid mind… Arrrrgh! I’m so sorry you’re going through this again x x
    Ghostwritermummy recently posted…Elsie’s birthday giveaway: win a Britax Revolution Pro!My Profile

    • kate
      Author
      October 30, 2015 / 4:55 pm

      I definitely think reflux can add to other trauma – hugely! It definitely has with me. There was no way I was letting my baby back in hospital either, I totally understand that.
      I am so glad Elsie’s is being relatively well managed now, it’s just such a sad condition.
      Reflux is definitely NOT a figment of a paranoid mind – only someone who has never experienced reflux would say that…

  6. October 29, 2015 / 7:28 am

    I have every sympathy with you – Harry’s first 6 months were stolen (such an apt description) by the same condition. I remember sobbing at yet another weigh in, the treks back and forth to the hospital for paeds appointments and the overwhelming fear that there would always be something wrong. We’re not pregnant again yet but the worry is there already and I’m contemplating staying dairy free as a precaution.
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    • kate
      Author
      October 30, 2015 / 4:56 pm

      It definitely steals time from us – time we should be enjoying.
      I don’t think staying dairy free would be a bad move – it certainly can’t do any damage and would be so worth it if it allowed you to enjoy those first few weeks more. Good luck if you decide to have another xx

  7. October 30, 2015 / 10:44 am

    Oh sweetie this made me cry because I can completely understand. I feel like I’ve never had a newborn and I’m already so worried that Thimble will have reflux too because he/she will be my last baby, my last chance to have a tibytiny, curled up newborn instead of a rigid screaming one and scared. I’m glad Eliza is doing so well now and you absolutely haven’t failed her, she thrives because of you xxx
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    • kate
      Author
      October 30, 2015 / 2:39 pm

      I am keeping my fingers crossed your little Thimble doesn’t suffer from reflux. Thank you xx

  8. October 31, 2015 / 1:20 pm

    Aww Kate, the sad thing is there is nothing you could or can do to prevent this, you are there for your children, you do the best a mother can, never remember that to your children YOU are their World.
    Reflux certainly robs some of the special times, the early years even, but it won’t always be part of your lives, there is still so much to come, sending hugs and stay strong as you can x
    sadie quinton recently posted…My Review of the EasiYo Yogurt MakerMy Profile

  9. October 31, 2015 / 7:06 pm

    I can relate to this so much. The first few weeks/months with my daughter who had reflux & milk allergy were so hard I was so baffled by my daughter who screamed & screamed. There was no newborn cocoon here either & the constant weigh-ins & stress over weight gain. I hope things are better for you now xx
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  10. November 1, 2015 / 7:14 pm

    This made me cry. Little G had silent reflux and we didn’t know until about 3 months. LJ had reflux and I knew immediately. She was on gaviscon for months and months. I am frightened to ever have another baby, to put them through it again. I know exactly how you feel. Big hugs x
    Katy recently posted…Our Cosy Halloween At HomeMy Profile

  11. November 1, 2015 / 7:59 pm

    So sorry you’ve had to go through this again and you feel this way. Both of my kids had reflux and it does dominate those baby days. My son had allergies, too, though fortunately outgrew them at around twelve months. It’s so hard, sending love x
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  12. November 1, 2015 / 8:50 pm

    So sorry you had to go through this twice. You absolutely did not fail your little lady, you have done the best you can and you trusted your instincts that things were getting better. I really feel for you, my son had reflux and we had him on gaviscon but it was no where near as bad as what you have been through. I’m glad to hear that things are on the up xx
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    • kate
      Author
      November 2, 2015 / 10:20 am

      3 of my 4 were born early too, and you think once you leave the hospital and SCBU it will all be fine, but sadly that isn’t always the case!

  13. November 2, 2015 / 10:13 am

    Oh I am so sorry you’ve had to go through this again! It’s terrifying and so upsetting. I’ve actually cried reading it. You haven’t failed anyone and you are an incredible, strong mummy!! Make sure you remember that xx
    kerry norris recently posted…Pregnancy thoughts and emotions – Inside OutMy Profile

    • kate
      Author
      November 2, 2015 / 10:20 am

      Thank you xx

  14. November 2, 2015 / 11:04 am

    Reflux is not easy on our babies. Up to this point I still haven’t got an idea if chloe had reflux. She kind of had the signs but she didn’t lose weight.
    She was definitely suffering with colic and still is. Farting all the time. We are down to 3 bottles with 15 Oz of milk a day at 9 months. She just doesn’t like bottles
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  15. November 2, 2015 / 8:39 pm

    Oh hugs Kate. How awful that you have been through this with all of your children. My eldest suffered with reflux and it nearly broke me. Like you I feel as though the newborn stage was stolen from me. I used to just sit at home crying covered in vomited milk.
    Sian @ QuiteFranklySheSaid recently posted…REVIEW: Quinteassential TeasMy Profile

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