Our Silent Reflux Story
Updated: Feb 23, 2019
I share about our journey as we suffered and learnt all about what silent reflux is, what the symptoms are, and how to diagnose and treat it.
I'm sharing this story for two reasons; firstly because in the past few years there have been so many moms who have asked me to share my story and the knowledge I have gained with them so that they can help their reflux babies, and secondly because like any traumatic life experience, I need to process it all in order to move on. So this is our story so far. I have written a separate blog with the 'need-to-know' facts for reflux mamas looking for help and information, you can find it here.
I have to start this story by saying that Lexi is the most happy, active, friendly, and chilled baby girl, so much so that when people meet her, they battle to believe we have had any trouble with her. It has been rough but the happy moments well outweigh the awful ones. I am not complaining by telling this story, or asking for sympathy, but rather hoping that I can encourage other mamas so that they know they aren't alone and that they will come through the other side.
What is silent reflux?
You know that horrible feeling of vomiting up in the back of your throat and then swallowing it back down? It leaves that burning, acidic, spicy-supper-coming-back-to-haunt-me kind of feeling. Silent reflux is that, all day and all night. Some babies vomit a lot and are perfectly happy. Some vomit a lot and are miserable. And some have silent reflux and are very miserable but often no-one knows why because we can't see any vomit.
What you can see are the symptoms - there is a full list here. With Lexi, there were so many symptoms that I now recognise, but didn't before I knew what to look for - arching, hands in her mouth, fussing in the evenings, waking when put down, fighting feeds, thrashing at night and so much more. Most babies with SR cry loudly and a lot, but Lexi barely cried at all. The biggest problem was that she refused to sleep during the day. Don't get me wrong, she was exhausted and would fall asleep quite happily if you walked around the house with her and held her upright in your arms, but no matter how fast asleep she was, put her in her bed and she would be awake and crying within minutes. So much for mom sleeping when the baby sleeps, it never happened. At night we would pace the room with her and it would sometimes take more than 2 hours to get her to sleep. The brave soul never cried, she just lay wide eyed in the arms of her highly frustrated parents as they marched around the room with her in the dark singing Christmas carols because they didn't know many lullabies yet. Once she was asleep, the nights were bearable but she definitely wasn't a happy soul. Looking back, I think she only slept at night because of the exhaustion of not sleeping all day.
I remember the one day so clearly; I was home alone for the week and all I wanted was one "good" day where my baby just did what the books said she would do. Ok, even one decent nap would have made me happy. I don't think I showered or ate a proper meal that day, I certainly barely left the nursery. The curtains were closed, the white noise was playing, the swaddle was tight and my baby didn't sleep. I think her longest nap was 20 minutes, the whole day. She would be asleep on my chest and then I would feel her tense up, and her eyes would pop open. She would often whimper and squirm but never really cry but by late afternoon we were both in tears.
The thing is, parenthood often feels like walking through a maze in the dark. Your end goal is a healthy, happy child. Luckily there are many books, apps and helpful friends to help light the way. Unless your child doesn't behave like they say she should, then you are suddenly stumbling around in the dark again, lost and helpless and comparing yourself to all the other moms who seem to be getting it right and are headed off in the right direction.
Slowly we learnt coping mechanisms, Lexi loved being draped over an arm when she was awake and would even nap like that. If I put Lexi in a carrier or wrap or just held her upright on me and kept moving, she would sleep. So for every nap (she was taking about 5 a day at that point), I was standing jiggling the baby to keep her asleep for 45 minutes. She would still wriggle and flinch from the pain but she slept, which was amazing.
The cat naps and evening fights to get her to bed were bad but then the feeding aversion started. For the first 6 weeks Lexi fed beautifully, in fact she seemed to be drinking all the time! I didn't realise that this comfort drinking was to try and soothe her burning throat. Eventually she realised that milk meant pain and started to fuss and fight at feed times. It became a huge struggle trying to feed her and she would only really eat when sleepy. She would cough, splutter and arch away from me. My hubby would pace the room, rocking her to get her sleepy before I could feed her for a few minutes. Feed, rock, feed, and then finally she would sleep. All day, every day. Did I consider formula? Not really, mostly because Lexi refused to drink from a bottle, but also because I had set my mind and heart on breastfeeding and didn't want to 'fail'.
I am part of a wonderful breastfeeding support group on Facebook. Moms post pictures of babies in blissful milk comas and gush about the amazing bond they were growing with their babies. Other moms stress about low milk supplies and painful nipples. I had milk to spare and no problems breastfeeding but my baby hated feeding and I started hating it too. When I would ask about fussy feeds, thrashing about at night, not sleeping and countless other issues, I was generally just advised that it was just what babies do. Another well meaning friend told me that if babies are tired, they'll sleep. I stopped going out in public because I couldn't feed Lexi without a huge fuss and milk spraying everywhere, so I just stayed at home.
I spoke to the local doctor and a lactation consultant who both didn't take it very seriously - they said that babies don't sleep and she was just being fussy or had an immature digestive system or was on a feeding strike. The thing is that if your baby is gaining weight, no one is really too worried. Lexi was gaining beautifully from all the comfort feeding and I felt so silly listing all the other random symptoms that I knew just weren't normal. A friend had suggested that perhaps Lexi had Silent Reflux and at first I was totally in denial. I thought it was something that premature c-section babies had, not my big, strong girl who drank so well and was born the 'right' way, natural and unmedicated. Plus, if she did have SR then we would have to give her meds and I wasn't really into giving meds to babies.
To medicate or not to medicate
Eventually one day I snapped and drove over to a friend's house and asked her all about her little girls' reflux. It sounded like she was describing Lexi! I phoned the paed and after asking a few questions, he agreed with me that it sounded like SR and prescribed Gaviscon and Nexiam. By this point I was willing to give Lexi anything that helped, and I was pretty sure it would be a few weeks before Lexi was as good as new. It was challenging figuring out the meds and getting them down Lexi's throat with a syringe while she cried but we both got better at it. The challenge with Nexium is that it needs to be given on an empty stomach, and then you can only feed after 30 minutes. This doesn't really go down well with a baby who feeds on demand. This had to happen in the morning and the evening.
Nexium is a Proton pump inhibitor, you can read more about it here,but in essence it reduces the amount of acid that the stomach produces, so the reflux still happens, it just doesn't burn. The Gaviscon is meant to help keep the milk down but it didn't really work for us.
While I hated giving Lexi meds, I came to the realisation that I couldn't let my feelings about medication prevent her from being pain-free, well rested, and happy.
She couldn't reason or talk, but if she could have, I'm pretty sure she would have wanted meds too. It also meant that hopefully she would start feeding better and learning better sleep habits. I don't think that one should medicate babies for every issue, but I do think there is a place for modern medicine. And honestly, if things didn't change soon, I was going to need some pretty serious meds too, of the happy-making kind.
One day at a time
Nexium can take up to two weeks to really have an effect and I waited with bated breath for my new baby who would sleep well and feed beautifully into a happy little milk coma. It didn't really ever happen unfortunately. The naps were still happening on us and the feeds were still a fight. Instead of stopping the meds after a few months, we increased them.
We also tried all the natural options - the chiropractor, the body worker, the homeopath. Nothing really helped. I tried giving up dairy for a few weeks but it didn't seem to make a difference. I tried block feeding to slow down my over-supply of milk and forceful let down. I fed in the laid back position and help Lexi upright for ages after each feed.
There were a few amazing naps where she actually stayed asleep in her bed, and a few nights where she only woke once for a feed. I also can't go on without saying that Lexi was becoming the most happy, chilled, delightful baby, not to mention that she was, and still is really physically advanced for her age. I can't help but think that all the snuggly sleeps on mom and dad and being upright in a wrap not only helped her physically, but emotionally too. I was so worried that we were forming awful sleep habits but now I realise that a healthy, happy baby is the most important thing.
I started spending a lot of time on some really amazing reflux support groups on Facebook (what else do you do when your child is napping on you 5 times a day?) and read about many babies with horrendous reflux, years of screaming, hospital visits, failure to thrive, feeding tubes and aspiration amongst other horrors which also helped to put things in perspective.
But I longed for routine; to be able to know that Lexi would nap at a certain time and wake at a certain time. She needed me to help her sleep and she needed me for food. I felt so tied down and trapped!
My maternity leave was over and although I work from home and could make a plan, there wasn't much work happening. My motto has been to just take each day as it comes, one day at a time, sometimes even one nap at a time.
And there were good days, and awful days, and many many hours spent sitting in the nursery while Lexi slept on me. Although I had read about foods that breastfeeding moms should avoid with reflux (cooked tomatoes, citrus, pineapple, peppers, onions), and read that avoiding dairy and soy can be really helpful, I didn't really see Lexi's reflux getting any better or worse when I ate or avoided them. Until one day I did notice that when I ate things with cooked tomatoes, she seemed to suffer more. I started to reevaluate whether what I ate could be affecting her and looked into how to alter my diet to help her.
Other than dropping the reflux trigger foods like cooked tomato, the most basic option is to drop dairy and soy, the major culprits. Although I never eat soy, I was addicted to dairy - cheese, cream, a big glass of creamy farm milk. The thought of giving it up had always been to much to bear but after 5 months of SR, I was ready to try anything.
The next step is to drop all of the potential allergens, known as the top 8 - dairy, soy, eggs, peanuts, wheat, nuts, fish and shellfish. If that doesn't help, then it's time for TED... the Total Elimination Diet. This is where I joined the online world of moms who basically deprive themselves of all sorts of foods, sometimes for years, in order to keep breastfeeding their babies. TED means choosing the least allergenic food from each food group and only eating that. For me that looked like pumpkin, courgettes, lamb, olive oil and pears. I slowly added chicken and broccoli to that once I had given them to Lexi and seen that she didn't react to them.
Now that she was old enough for solids, it really helped, but at the same time I felt a bit robbed. I had been so excited to introduce Lexi to solids and do Baby Led Weaning. I wanted to make her yummy food and enjoy eating together, and now suddenly I was second guessing every bit of food I gave her and every time she had a reflux-y day, I would wonder which food that I had given her was the culprit. But we took it slowly and to start with, avo was a firm favourite with lots of playing with everything else.
This too shall pass
Things are started to improve slowly as Lexi grew. It was easier to give her medication. For the first time since she was a newborn, Lexi was breastfeeding without fretting, fussing, arching and pulling off the breast. We would still battle with burps at 7 months, and they often meant she didn't nap as long as she or I would have liked. But she also learnt to fall asleep in her bed which I never thought I would see. We read a story and once she is drowsy, I pop her in her bed on her tummy, and she drifts off to sleep. All my fears about creating bad sleep habits were unfounded, she's just fine! Nights still weren't great, and she was still uncomfortable in the early hours of the morning, usually waking about 4:30 or 5:00. If I hold her upright on me and give a few bum pats, she can generally make it through to 6:00. And there were still flare ups but we had enough 'good' days now to know that we were going to make it through this and come out the other side stronger.
Although things got better, they still weren't great so I started slowing down on the solids to see if that helped. This led to more night waking and a hungry baby who was losing weight so I went to visit the paediatrician. He wasn't happy with Lexi continuing on PPIs (Nexium) when we weren't sure if her waking and problems sleeping were behavioural or reflux related after all this time. He suggested a pH scope so that we could find out what was actually going on. I was nervous to have her in hospital under observation for 24 hours, but really keen for some answers so I agreed. You can read the full story here but the long and the short of it involved taking Lexi off meds for a week, putting a probe down Lexi's nose and into her oesophagus for 24 hours while we tried to do 'normal' life - feeding, naps, playing, and the probe would monitor what was going on.
She seemed to be doing really well of her meds and I was convinced that the doctor was going to tell me it was time to stop the meds as Lexi’s reflux wasn’t that bad. Unfortunately that was wishful thinking. The doctor's analysis of the probe results was that most of her symptoms correlated with reflux episodes (97%) and she had refluxed 37 times in 24 hours and it was quite acidic so the doctor wanted her back on maximum meds. I was so disappointed but glad to know what was going on and have the doctor on board with putting her back on the meds now that we knew they were really needed.
After the probe, the paed let us try new meds - omeprazole. It is an capsule that you open and pour the beads into a tiny bit of pear or apple puree and give your baby. It really made a huge difference and I wish we had been on it sooner. From there Lexi behaved like a "normal" baby with regards to eating and sleeping. She dropped a night feed at 11 months and started sleeping through the night, and ate solids so well. She barely fussed when she teethed, and was generally her usual lovely self. We tried weaning her off the Omez a few times, but were only successful when she turned 2. We went cold turkey and waited 2 weeks and she was fine. At 3 years old, she still refluxes a bit sometimes, or coughs, and likes to drink water to soothe her throat, but otherwise she is off meds and doing great.
Unfortunately, if you have one reflux baby, you are often likely to get another and that was very much the case with my second baby, Finn. Except that where Lexi suffered in relative silence for the most part, he was a screamer.
Finn would fuss on the boob from early on, he didn't sleep well from about 2 weeks old, and would suddenly go red in the face and scream inconsolably. A giant pilates ball did wonders and he basically slept in our baby carrier for the first two months of his life.
We put him on Nexium at 2 weeks old, and then onto Omez at 2 months old, and it was only once he was on the Omez, that he really settled and began sleeping better and feeding well. Like Lexi, he also preferred tummy sleeping and with a lot of practise, became a really good sleeper.
Finn is now 16 months and still on Omez, our hope is that by 2 years old he will be off it like Lexi. It is hard to have another reflux baby, but I am so grateful that I knew the symptoms, the signs, how to help and what meds to give this time.