The story of Emma and Oliver

The joys of reflux

My beautiful little boy was dragged into this world 5 weeks early by cesarian kicking and screaming, we were over the moon to hear him crying and even more so to be told that at 4lb 4oz he was big enough not to need to go to the special care unit that we had been prepared for. I was even more pleased when he then also tried to feed in the recovery room, but this was the last good attempt at feeding we were to have for a while, by the time the night staff came on duty I was lucky to meet a fantastic midwife who listened to my concerns, looked at my jittery baby and realised that even though he was too sleepy he needed feeding so they set about cup feeding him overnight. Over the next couple of days he picked up a bit and was managing to have more feeds albeit brief ones. His feeding continued to be poor once at home and I found myself having to strip him naked and bounce him up and down to rouse him enough to convince him to feed. By the time he was a few weeks old his weight plateaued and then dropped. By this time he was also having difficulty with his breathing and ended up in intensive care on a ventilator with bronchiolitis. It was after this when we were back on the children’s ward at our local hospital for over a week that I first really thought that reflux may be an issue. He had always been uncomfortable during feeds, coughing and frequently having hiccups but now things were getting steadily worse. After every feed I would have a nurse come into our room to check he was ok as he would be screaming and arching his back in pain. I discussed the possibility of reflux and the nurses agreed that it probably was and I even had someone recommend a local osteopath. I decided to wait until he was over this illness and back home to see how thing settled.

Oliver's reflux story

How did things settle? Well they didn’t and when we went for our follow up with the paediatrician he felt it was important to start medication as my son was already a low birth weight and he didn’t want him to start refusing feeds. The medication (Domperidone & ranitidine) helped a little but the symptoms of reflux were still there. At around 6 months of age we started another medication Omeprazole and after a week it suddenly seemed like we had an answer as we had a baby who was now happy for a large majority of the day. The reflux was by no means gone but it was being controlled a great deal better with this new medication. We were still getting little sleep though and by this stage I had resorted to sleeping with him propped up on my arm in bed, anything to get a bit of sleep myself! At some stage in these first 6 months I was introduced to a fantastic health visitor after a member of staff from the local children’s centre found me broken down in tears in the library after little sleep with a cranky crying baby and a 2 year old who wanted my attention. More than anything it was good to have someone come to my house to discuss things and see how much my baby was suffering, I found myself apologising for him crying after I had tried to feed him but then realising that this was not normal and it was such a relief for someone else to see this and agree.

Weaning! I had hoped that at 6 months the onset of weaning would be a magical cure for reflux as I had heard from some people but sadly this was not the case and actually made things worse, after a bit of thinking (takes quite a while these days with the sleep deprivation) we realised that there may be a specific cause and decided to try omitting wheat/gluten and after a week things improved! After discussing with my health visitor she advised to continue gluten free and she would organise a dietician referral.

Emma and Oliver

This brings us to now and at 9 months of age the paediatrician has decided to throw a new possibility at us, the possibility of cows milk protein intolerance. So what does this mean for us, well as I am still breastfeeding it means both of us omitting all dairy from our diets something which has led to an amazement in how many foods contain dairy! My biggest lesson from this so far is that rice milk is horrendous but oat milk is quite drinkable. My son has now been milk free for 2 weeks (apart from one small highly unsuccessful trial of a little formula) and I have been milk free for a week (took me a while to give up the chocolate). Part of me was hoping that this would not have an effect as I did not want to remain dairy free but I think we may be having some success. The biggest change has been he is sleeping, not through the night but I never expected miracles! but in the past 4 nights he has not woken until 10/11pm which is a vast improvement on what previously had been 9 at the latest and has actually given me time to eat a dinner at a normal pace and to write this story down.

So this is my story so far of the joys of living with reflux, I say joys because I have had enough tears and can now look at the positives and am hopeful that someday soon I will have a baby who is free from pain and discomfort.

Baby Oliver