Louise Flanagan (Mum to Ryan, Kent, Surrey and Sussex parent advisory group member) shares her experiences of life after neonatal care.
My son Ryan was in neonatal care for 110 days before coming home. I remember when we were close to going home, the nurses kept saying they needed to take me on a tour of the children’s ward. They kept warning me that Ryan would have re-admissions after being discharged and that his first winter would be very difficult. I went on the tour. I listened to what they said, but I didn’t take it seriously at all. I didn’t want to. I wasn’t even home with my son yet and I was being told about coming back! I remember thinking (hoping) he might be different.
While it’s always important to have hope, I wish I had listened better and prepared myself like the nurses wanted me to be. Ryan was re-admitted only four weeks after coming home and then quite a few times after that, especially over the winter. I hadn’t appreciated the neonatal journey doesn’t end when you take your baby home. Taking your baby home after a neonatal stay is wonderful; nothing that follows will ever take away that memory and the happiness having them home brings.
The first year of Ryan’s life I found incredibly hard. Ryan came home on 16 of July on oxygen, a lot of different medicines and with some conditions still needing treatment. At first, we had nurses visiting us twice a week and on average about two hospital appointments a week too. I felt like I was always at the hospital, but just popping in and out for appointments, being able to just walk out the door afterwards together; that never stopped feeling like a privilege.
I felt like a carer to Ryan for quite some time. The days were planned around medicines, blood sugars, special feeds, appointments, etc. He also had a physio and we had exercises to do most days. Over time, this did gradually change. Appointments and visits became fewer, medicines dropped away (which was always a wonderful achievement) and he came off his oxygen around the beginning of November. I cried happy tears all day that day!
One thing about leaving the unit that was very daunting was how vulnerable you feel to germs. They give you a lot of advice about keeping your baby healthy, a lot of which is similar to when you’re on the unit. I took it all very seriously; people had to wash their hands when they came into our house and I always checked if people were well before we saw them. I also had huge supplies of hand gel. I found some lovely little badges and signs to hang from Ryan’s pram that said something like ‘Please don’t touch me, I’ve been poorly.’ You’d be surprised how many people go to touch your baby when you’re out and about, so these do help.
All children have a lot of illnesses growing up while their immune systems develop, but some premature babies have a much harder time, especially if they’ve come home on oxygen. Ryan tended to become unwell very quickly and was more likely to develop complications. We always had a hospital bag packed ready, which was helpful – trying to pack a bag in a panic isn’t fun and you always forget something. Usually something important.
Despite all my efforts, Ryan was ill quite frequently. In the winter months, it felt constant. The urge to hide away inside was overwhelming, but I knew this wouldn’t do either of us any good. We did go out into the world when Ryan was well enough, we were just careful about where we went.
People do stare when you have a child on oxygen (a feeding tube would be the same I imagine). It takes a bit of getting used to – sometimes I would forget for a second and wonder why people were looking at us! But most people are just looking due to concern or general human curiosity. A lot of people chatted to us about it and asked if Ryan was ok which didn’t bother me. I thought it was nice to chat sometimes, albeit to strangers. I found the whole experience of caring for an unwell child very lonely. I couldn’t go to places with Ryan that other mothers would and we had to cancel plans a lot. I’d mainly take him on walks, to cafes, the library or walking around the shops. Somewhere there was life and people, but where we weren’t too exposed to germs.
You’ll find that some friends and family just won’t understand and think you’re paranoid. This would bother me, but I’d try to remind myself that these are lucky enough to not understand how it feels to have a vulnerable child. Just try to ignore them – most people will be understanding. I was lucky enough to make a few friends during my neonatal stay that I kept in touch with. I cannot tell you how beneficial and special these friendships are. I always found that I wouldn’t even have to say very much about how I was feeling and they would understand completely. We were a great comfort to each other in that time post neonatal.
With the arrival of spring, there came some relief. There started to be longer gaps between him being unwell and we were able to do more. That was a time I really remember being filled with hope, looking to the future and making plans.
Sometimes I would be brave and take Ryan somewhere I knew was a risk and then a week later he would be very ill and I’d blame myself. But I knew deep down that I had done the right thing. We needed to live too, and I didn’t want Ryan to grow up afraid of the world. It’s all about balance. I remember the first time I took Ryan to a soft play. I went with a neonatal friend when our kids were about 18 months. The two of us encouraged each other to be brave and it felt like a huge deal to take them to somewhere so exposed. The kids loved it of course and we resisted the urge to bath them in Dettol afterwards!
Ryan was still having trips to A and E and some hospital admissions up to the age of three, but they had reduced. Every time this happened it would feel so crushing. That feeling to hide him away from the world would creep back in again, but both his Dad and I would do our best to fight it.
When your child has had such a rough start and then they do start to hit milestones (whenever that might be) it feels incredible. It’s such an amazing achievement for you as a family and a great reason to celebrate. Ryan is almost four and it feels like his neonatal journey has pretty much come to an end now. He has very few hospital appointments and is doing fantastically. It really does feel wonderful to be on the other side and not a day goes by where I don’t feel incredibly lucky for how things have turned out. While the first part of his life was so very hard, Ryan and I did have a lot of fun together and our bond was always so very special. You do learn to really appreciate the smaller things and have fun whatever you do. I would always tell him we were having an adventure, even if we had a day of hospital appointments. We made the best out of everything.