Reggie, our fourth bundle of joy, was born on 27th December 2018 weighing in at 9lb3 after an hour long labour... he was my biggest baby!
He was born in a hospital about an hour from our home town and as the birth went quickly and smoothly the hospital agreed for us to transfer to our local midwife unit to recover until we were ready to go home.
Our first night there my husband went home to be with our other children and I stayed with Reggie alone at the unit. During the night I raised concerns... he seemed extremely mucusy, he was coughing and gagging a lot and he sounded bubbly when he breathed. I rang for a midwife and said I didn’t recall my others having the same after birth and I was reassured it was normal.. probably due to my quick labour he might need to cough some fluids up from the birth. We went home the next day. During the next week or too i continued to feel uneasy. He was constipated, blood in his poo and his chest seemed to be getting worse. I brought these up at every midwife check up, Heath visitor check etc. Every time I was told it was normal, our midwives weren’t all together happy with his weight gain so didn’t discharge us at ten day, they wanted to see us again at 14 days but told me everything else was fine he may be coming down with a slight cold. My health visitor told me to feed him cooled boiled water in between feeds to help with his constipation... he wasn’t even two weeks old!
One Wednesday morning at 13 days old after a night where his breathing was rapid and irregular I took him to my doctors. I was told categorically he was fine, I was an “over worried anxious new mum” and his lips weren’t blue and his chest was clear. I left in tears because no one was taking me seriously and I knew something was wrong.
That night I took a video of his breathing and sent it to a nurse friend who told me to ring 999 but with the doctors words in my head I hesitated and called 111 for advice. I was on the phone two minutes before they had dispatched paramedics. They arrived and took one look at him and rang for another set of paramedics. He was blue lighted to hospital. His oxygen levels were dangerously low and he was fighting for breath.
He spent four hours in RESUS and was then transferred to a ward. He spent six days on OPTIFLOW oxygen, being tube fed and on antibiotics. He had a diagnosis of bronchiolitis and pneumonia. On our last day the consultant came to check on us before discharging. I mentioned his constipation and I had noticed his skin was beginning to rash as well. He said constipation was normal in formula fed babies and the rash was probably viral and we were sent home. The next day we saw the midwives to check his weight. Again slow weight gain but they blamed his hospital stay and discharged us from their services. When we got home I said to my husband “I think he has a milk allergy” and even he shrugged me off at the time and said he just had a virus he’ll be better soon. The rash got worse, it spread all over his chest and became more blotchy like hives than a viral rash, the blood in his poo continued and then came to colic and reflux symptoms. His congestion in his throat was still there although he wasn’t struggling to breathe like before, arching his back, periods of screaming, projectile vomiting.
In the end I took him to the doctors again and I said he has a milk allergy and he said “well you’re giving him cow and gate milk, is that because it’s the cheapest? The NHS isn’t here to feed your son” he prescribed me one tin of Aptamil Pepti 1 and told me if we needed more I was to buy it. The Aptamil made no difference we saw no change, I saw a different doctor who prescribed Nutramigen and again.. two weeks of that and no change, but this point I was desperate, my poor son was in pain, his eczema had spread to his face and head and he was screaming in pain after every feed. His weight gain was still slow. I rang my doctors and cried down the phone, I begged for Neocate and he said he couldn’t prescribe it without a paediatrician to officially diagnose and authorise. He said he would sort a referral but we had to make do. By this point he had dropped down two centiles with his weight, was beginning to refuse feeds and barely slept. A week later I rang another doctor and begged her to chase our referral, I explained how sick Reggie was and she asked to see us that afternoon. I took him in for what I thought was a routine check and hoping to come away with some Gaviscon to at least alleviate some symptoms, but she was convinced it wasn’t an allergy at all, it’s was pyloric stenosis. I insisted I didn’t think that was the case but she sent us to hospital and so began our next stay. After three days admitted and nil by mouth and talks of surgery and two ultrasounds they decided it was in fact a milk allergy, not pyloric stenosis. We were discharged with Neocate, Ranitidine and cream for his eczema. I was exhausted.
We are now three weeks on from that trip. His eczema has nearly gone, his constipation gone, colic symptoms gone and reflux being well managed with Ranitidine. He sleeps brilliantly, he’s happy and chilled, just a totally different baby... and he’s now gaining weight! So much weight in fact he’s back up to his original percentile!!
I am so relieved we finally got here, the guilt that came with feeling like I was failing my son because I couldn’t get him what he needed had been a heavy burden that had affected my relationships with my husband and my other children. He’s only 12 weeks old so I know we have a long road ahead, I’m scared of weaning but with the help of a dietician I hope that he won’t be back to where he was before!!!
Always trust your instincts xx
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