Making NICU home – Kate’s story

My son Jacob was born at 29+2 weeks in 2016. We first found that the pregnancy was not progressing as it should at his 20-week scan, which showed he was measuring small. At 27 weeks, his growth slowed down significantly and I was immediately referred to a consultant. He told us that Jake’s poor growth was likely caused by difficulties with the placenta and would probably result in him being born early.

By the end of the week, I was admitted to hospital with pre-eclampsia and Jacob was born a week later, weighing 1lb 10oz (749g).

Jacob was initially too small to be cared for at our local hospital so before I gave birth, I was moved to a larger hospital in the next county. Fortunately, my husband, Ed, and I were given a room to stay in on the neonatal unit for the month that that was Jacob’s home.

Having your baby on a neonatal unit is a daunting experience. As we had some advance warning of his early birth, we had the opportunity to visit the neonatal unit before his arrival. But, this didn’t really prepare me for seeing this tiny baby lying in his incubator amongst a sea of tubes and wires. Suddenly I found myself launched into a world of beeping machines and medical terminology, which was far from how I had imagined starting out motherhood.

In the days before I had Jake, I read other parents’ stories about how, even though their babies were so small, they instantly fell in love with them as soon as they saw them. However, when I first met Jake, the morning after he was born, I did not feel that rush of love I was expecting. I found it strange to recognise this little person I could only touch through the holes of the incubator as the baby who was meant to still be growing inside me.

I didn’t realise it at the time but, while I was grateful that Jake had arrived, it felt wrong to feel happy about his birth when it had happened before it should and when he was so poorly. This changed a couple of days later when a nurse helped me to accept that I couldn’t change the fact that he had arrived early and that it was okay to embrace the special journey that we had found ourselves on. After this conversation, I felt confident to gradually learn how to care for Jake, which helped us establish the close bond that we have now.

I was really grateful for all the cards and messages we received, especially because we were in an unfamiliar and unexpected situation. Each day I would go to Jake’s hospital cot and there would be another card or two that had arrived in the hospital post and whenever my husband went home, he would return with another stack of cards. I used them to decorate the room I was staying in and by the end of our stay at this hospital, I had cards right around the room.

We were also fortunate to receive many lovely gifts. As soon as he was born, family and friends started making hats and clothes that would be small enough for him to wear and he received many special toys and blankets. Many of the gifts needed to wait until he left NICU to be used, but he was given one gift especially for his hospital stay. My dear friend Lucy made him a beautiful incubator cover, decorated with a picture of Noah’s Ark and his name. It was lovely to be able to use this on his incubator to make it as homely as possible and it got lots of compliments from all the staff and other families on the unit.

Jake is now 4 years old and getting ready to start school in September. He has come a long way from the tiny 4 lbs 8 oz he weighed when he left hospital the day before his due date. His preschool years were not what I would have anticipated before becoming a mum. His neonate stay was only the beginning of his journey: he spent his first few years in and out of numerous hospitals in our region and is still a familiar face in our local paediatric outpatient department.

But he has overcome so many more hurdles than I thought possible in those first few months. He has always been aware of his neonate journey; he knows that the doctors and nurses had to help him grow as he was too small for mummy’s tummy. He is also aware of lots of his special gifts he was given during this time, like his incubator cover. As he starts school and the next step of life’s journey, we move further away from his difficult start, but we will never forget all the support we received and those who helped us along the way.