SILENT REFLUX - OUR STORY

Our story is very targeted to all you Mamas out there who have dealt with many a sleepless night and specifically those mums who have dealt with silent reflux with your little ones and may be struggling with it, this is for you!

Firstly, our story is a long one and please remember I’m not a doctor and I’m not encouraging you to do anything I’m just sharing what we went through and what helped us get through the toughest times.

Being a first-time mum and going through what I did with Nixon, my long nights and tired days turned into my research time. Researching symptoms, answers, help and mostly wanting to read other mum’s stories.

I’ve been asked to write our story by a dear friend, one who has been there to hold my hand since Nixon was 6 months old. So, I’m hoping by sharing my story I can help share, guide and reassure other mums that it gets better!

Nixon was an extremely fussy baby from day dot. Nixon didn’t latch on straight away for breast feeding and after 12 hours of trying and having a very large (9.9 pounds!) hungry baby we chose to express and line fed. This was still not enough, and so by day 3 we started topping him up with formula. Nixon lost weight straight away before we even left the hospital we were kept in an extra day to be monitored. After 5 days we were sent home after his weight had stabilised. Feeding still wasn’t easy I tried every day to breastfeed, when I couldn’t I expressed and line fed, after time my milk started drying up even on medication and we decided to stop and solely went onto formula, this is when our problems started.

            

Before Nixon we had no idea about reflux or silent reflux. We just knew we had a very unsettled and unhappy baby of which we didn’t know what to do... Sitting down writing this and reflecting on our last 12 months certainly makes me realise how much we all went through. The first few months of his life were hard and unfair on him, and on me. Thank goodness for my husband and mum.

Nixon became the most irritable at 3 weeks old and would cry from midnight to 6am- being a first time mum I wasn’t sure why, I would try feeding, walking up and around the house, juggling and jiggling him, rocking and swaying down the hallways until I would finally get him to sleep. As the first few weeks went on his unsettled times started to stretch from 6 hours to 12 hours at a time, we started putting him in the car and driving around the streets until he would finally fall asleep but he would wake as soon as we stopped.

It became apparent to us that Nixon was crying more than your usual newborn baby and he was extremely irritable. When Nixon turned 6 weeks and times really started to get hard, we took him to see a paediatrician, this is where I was reminded that it is normal for babies to cry, however he believed Nixon may have ‘colic’. Needless to say, it wasn’t, only 48 hours after seeing the Paed we ended up in hospital with Nixon refusing any feeds for 24 hours and nonstop crying, my heart was breaking not being able to help him and not knowing what was causing all his pain. Being in a new environment and new people all around him, Nixon was quiet and content, sure enough making liars out of us. Doctors performed numerous tests and suggested colic and sent us home.

            

We returned to our Paed who suggested the possibility of a lactose problem and changed our formula to a medicated formula called Neocate. By 8 weeks Nixon had dropped a lot of his weight due to refusing his feeds, we trialled EVERY bottle you could possibly think of trying to get him to drink.

Conflicting diagnosis of colic and lactose left me feeling confused and I doubted myself, do I just need to harden up and this could actually be normal? I knew in my gut something was wrong and I began to read online about a great nurse that worked at my local Family Health Clinic so I booked in to see her when Nixon was 2 months, looking back now she was amazing! She suggested changing Nixon’s formula from Neocate to Allerpro due to possible taste issue. Needless to say, Nixon took the change well and began feeding again BUT this didn’t last long.

Returning to our routine check-ups with our paediatrician, Nixon was now 3 months old where again they suggested to change his formula as they suspected it wasn't lactose and maybe he was just being fussy. Under their guidance we followed the recommendation. At 4 months we were still not feeding well and still continuing to drop weight, so it was suggested to introduce solids to help fill him up and gain weight – Nixon was very accepting to puree pears and rice cereal. Over the next 4 weeks he was refusing all bottles and only accepting of solids (which we used formula to make his rice cereal).

Nixon’s sleep was becoming worse, he would only sleep for 15-30mins at a time day and night. I had read a well known sleep book when I was pregnant and I was adamant I was going to get Nixon into a routine, however with an unsettled crying baby this was near impossible. I found it very difficult to leave the house because Nixon wouldn’t settle in a pram as he was on his back. So, at this point the pram and cot were his enemies.

            

 

I began comparing Nixon to other children as to why they weren’t as unsettled as him, they would be sleeping/drinking/eating and not screaming. This once again got me to jump online looking for help and answers. I was recommended to see a local lactation consultant with regards to Nixon drinking from his bottle, she concluded he was lip and tongue tied. She referred us to a dentist to have it laser cut however following my gut told me this wasn’t the real issue and I sought a 2nd opinion from our family chiro who said he didn’t believe this to be the problem.

Moving forward a few days again we landed ourselves in hospital once again with Nixon refusing bottles and solids for 3 days. He was tested for dehydration however they put it down to him having a respiratory infection due to his low immune system. The Dr did suggest having weekly follow ups with our GP for weight management. Our GP referred Nixon to have an ultrasound on his stomach to see if there was any inflammation causing him not wanting to drink and eat. All tests came back clear. Time had passed and if anything, he was getting worse by the day.

We spent anywhere from 10 to 30 minutes rocking Nixon to sleep each time, gently putting him in his cot only for him to wake instantly or if we were lucky he would sleep up to 30minutes. On those tough nights we would be taking turns holding him, rocking him & patting him- it felt like it was never ending- I was exhausted! I was emotionally drained and so sleep deprived. I remember a few nights at 3am I would call mum for help. I felt at that moment I was desperate for sleep as was Nixon! I reverted back to online googling to find a sleep consultant that would help break these bad habits. My first sleep consultant was a disaster and she tried to move Nixon from a tummy sleeper to a back sleeper and remove his dummy. After 10mins of uncontrollable crying I had to call it quits as her methods were not working for me.  

This made me more determined to find someone who suited Nixon’s needs- I came across Sleep Play Grow. They had a package which involved a 3-night stay to help assess, plan and implement a new sleep strategy (to be honest I was hooked from the minute we spoke- Nicole just “got it” and fully understood everything I was trying to translate)

            

Before we could even make our plan, Nixon ended up in hospital again this time with ulcers down his throat and stomach from continual projectile vomiting. We were admitted to hospital once again this time for 6 days and Nixon was tube fed... it had to be one of the hardest things to go through. I remember calling Nicole and she suggested seeing a gut specialist paed in Brisbane. FINALLY, we started to get some answers and he straight away suggested these were all tell-tale signs of silent reflux. The Dr immediately put Nixon on Nexium medication and medicated Formula. We also saw a gastroenterologist who performed an endoscopy and concluded the ulcers were caused by acid build up in his stomach from reflux. This is when Nixon was finally diagnosed with reflux (7 months old!!). We were told to continue on the same medication however we could revert back to Allerpro (knowing he took it well in the past). The damage that the reflux caused to his stomach and throat was horrible but with the right medication we kept it under control.

When we returned home I felt a weight had been lifted... finally all the restless days and sleepless nights could be answered for, and after numerous doctors and hospital trips we finally had answers as to why Nixon was so unsettled. Although having silent reflux wasn’t going to be an easy road, we finally knew what road we were now following. I reconnected with Sleep Play Grow and honestly Nicole changed our lives! Nicole has the gentlest approach and worked with me every step of the way to ensure we helped Nixon to start enjoying sleep. It hasn’t been an easy road but I took her advice and followed it to a tee. He now sleeps like a trooper and actually loves his bed!

Nixon’s Symptoms

·       Tummy sleeper, would lay flat

·       Feeding was incredibly hard, inconsistent and sounded like he was guzzling

·       Hiccups which would start while feeding and last a long time

·       Uncontrollable crying for more than 6 hours at a night

·       Tight fits, stiff body and rattly chest

So here we are Nixon is now 13 months old- he is still having weight management issues but he is such a happy, lively, energetic soul. We are still medicated but only once a day (was originally twice), we have now started Aptamil Gold Toddler formula and Nixon is eating 3 solid meals a day. We still have our good and bad days where eating is difficult and a chore. I’m still not sure if this is still physiological (pain with eating) or if its FOMO (fear of missing out) but we roll with each day as it comes.

So please hang in there it does get easier and you will learn to love being a mum give it time, trust your gut and seek the help from the right people.

You can find our reflux baby E Guide here:

www.sleepplaygrow.com.au/shops