My 28 weeker - Amie's story

Although Amie had already had three previous children, her fourth baby was the first to arrive early at 28 weeks. Here she talks about what it was like to have a baby in neonatal care.

My pregnancy with my son was never an easy journey. I struggled with high blood pressure and gestational diabetes throughout so the doctors expected that the baby would have to be delivered early. They did everything in their power to keep my beautiful baby boy inside as long as possible.

In December 2016 and at around 27 weeks pregnant, I was admitted to hospital to have steroid injections to help his lungs develop. Whilst there, a scan was performed with a foetal monitor which revealed reduced growth and fluid. After they managed to get my blood pressure down, I was allowed home in time for Christmas.

At my next appointment, they found out I had group B strep, my baby’s growth was further reduced and that his heart rate was showing signs that he was not happy. The doctors told me that it was time to deliver. It was terrifying being told that I would undergo an emergency c-section. Although my son was my fourth baby, he was the first that was arriving early and delivered via c-section so I did not know what to expect.

They took me down to the labour ward and told me they would need to give me some medication to protect the baby’s brain from bleeds. They said the medication would need to be administered through my blood stream but they were unable to locate a vein. Eventually, the anaesthetist said they’d have to use a vein in my neck and I became even more nervous than I was previously. They told me that they would wait for the medication to start working before taking me into theatre.

My beautiful boy Mylo was born at 28 weeks, weighing just 1lb 11oz. Once stabilised, the doctors told us that he would have to be taken to a more specialist hospital around 50 miles away from our home. A transport team were on their way to collect him and I would not see him again until I was discharged from hospital myself.

Mylo’s daddy followed the ambulance to the other hospital and called me with an update about his condition. Mylo was very poorly when he arrived at the new hospital and his blood pressure was very low. He was put on a very large amount of medication to help with a range of issues including a blockage in his stomach. Because of the blockage, they were unable to get a tube into his belly to feed him until after they’d taken an X-ray.

Two days later, I was discharged from hospital. It was 11 o’clock at night but I went straight to Mylo’s hospital to sit at his bedside. I was desperate to see my baby and I was heartbroken when I saw the number of wires attached to him as well as the ventilator in his tiny mouth. I felt extremely guilty that I had not been able to keep him in my belly and allow him to grow and felt as if I had failed him. The only thing I was able to for him was express milk for him, which I did every three or four hours.

During his hospital stay, Mylo battled necrotising enterocolitis (NEC), sepsis, low blood sugar levels and prolonged jaundice. The long weeks passed slowly and when Mylo was just over 13 weeks old we were told that we could go back to our local hospital. By then, Mylo had started to feed without using his feeding tube and was making excellent progress.

In total, Mylo was in neonatal care for 15 weeks and one day. Those 105 days were the hardest of our lives. Whilst our little miracle fought for his life, we had three other amazing children at home who had to wait 11 weeks to meet their brother because of a flu outbreak. I was provided with accommodation at the hospital and I don’t know how I would have managed the 100 mile round trip from home every day without it. The accommodation also allowed me to have the maximum amount of time with Mylo which helped ease my anxiety about his condition.

Mylo came home on oxygen and stayed on it until he was seven months old. I then noticed that Mylo’s eyes didn’t seem to be able to focus on anything and would move from side to side. Mylo’s consultant seemed very worried and sent us straight to our local eye unit. When we arrived, the doctor took us straight in for a check-up before referring us to Great Ormond Street Hospital. Mylo was diagnosed with cerebral visual impairment and nystagmus.

Despite his ongoing eye conditions, Mylo is a very happy baby boy. As a family, we have never been prouder of our tiny little miracle.

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