Being a neonatal grandma – Juliana’s story

"Being the grandma of a premature baby is different to what you expect when you first find out your child is pregnant. That initial moment of joy is replaced with shock and worry about the possibility of losing one or both of the people you love most in the world." Juliana shares her experience of being a grandparent on the neonatal unit

When I found out that my daughter Coady was pregnant, I expected she would have a trouble-free pregnancy and normal birth at full-term just like I’d had with her. The thought of any complications didn’t even cross my mind and I was excited about becoming a grandmother and spoiling my grandson with love.

Two weeks before Coady gave birth, I knew something wasn’t right. When I looked at her, I could tell there was too much swelling. I urged her to contact her midwife as I thought it could be pre-eclampsia. Coady did and was told that a certain amount of water retention was normal in pregnancy but eventually they kept a close eye on her. Later on, my diagnosis was proved right – no matter how old your child is, a mother’s intuition is always right when it comes to their health.

The night before my grandson was born, I sat with Coady in the waiting room at our local hospital in Livingston. She was in tears as we waited to find out what they were going to. She was 29 weeks pregnant and the unit was not equipped to take care of babies of that size. Eventually a space was found for Coady at a hospital in Edinburgh where they said she would be monitored. She had developed HELLP syndrome and so a c-section might be necessary the following day.

As Coady was transferred, I went home to wait for more news. I tried to keep any negative thoughts out of my mind but I did not sleep soundly that night.

Everything happened very fast the next morning. Coady’s ex-partner messaged me and said that she was going into surgery. They had to get the baby out. Within minutes of receiving the message, I was told the baby was out but both my daughter and grandson weren’t doing well. I was in bits, thinking I might lose my daughter. Her body was shutting down.

Juliana1

Because she had an emergency c-section, I wasn’t able to be at the birth. By the time I reached the hospital, Coady was back in surgery. When I eventually saw her I was relieved. Despite the terrible ordeal she seemed fine.

I got to visit my grandson – Matthew – with Coady on that first day. He was along a maze of corridors and we could only look at him through his incubator. The neonatal unit was incredibly unnerving. All the alarms kept going off on the monitors every time a baby’s stats drop below a certain level. Eventually, Coady became so used to it she didn’t react, but whenever I was able to visit my nerves were jangled!

During those first few weeks, the major concern was making sure Coady could visit Matthew. Once she was discharged, she faced a long journey to and from the hospital. She ended up driving much sooner than she should have due to public transport being so awful. Matthew was being well cared for but had blips in his journey. I was aware how things could go wrong so quickly for a tiny baby and felt on edge for both him and Coady.

At the time, I worked for the NHS and had lots of support from colleagues who had gone through similar experiences as either parents or grandparents. This was very comforting for me and if I couldn’t speak to those colleagues I’m not sure where else I could have turned.

While Matthew was in hospital, I tried to help out whenever it was possible. When he was transferred back to our local hospital – where I happened to work – I’d nip in to see them both. I also tried to keep friends and family undated about how everyone was doing so that Coady didn’t have to. Occasionally I’d help Coady out with getting a few bits of shopping in. She was so focused on Matthew that she didn’t always have the time to.

Matthew got the all clear to come home on New Year’s Eve. It was an amazing start to the New Year. Coady was apprehensive to take care of Matthew without the round the clock care of nurses and doctors, but I knew she’d be a great mum.

Coady 3

I didn’t get to hold Matthew until he came home. At this point, he was almost two months old. He was still tiny but it was a wonderful feeling to finally have my grandson in my arms.

Being the grandma of a premature baby is different to what you expect when you first find out your child is pregnant. That initial moment of joy is replaced with shock and worry about the possibility of losing one or both of the people you love most in the world. When the baby is on the neonatal unit, the nagging fear continues as you worry about whether your tiny grandchild will be healthy. I could also never fully comprehend the extent of care he needed and what all the machines and medicines were for – as a grandparent, you are close enough to the situation to understand how serious it is but not quite close enough to feel fully involved.

Watching my daughter in a state of limbo, living that special care baby unit life, was also extremely challenging for me as her mother. It was difficult to watch how hard it was on her both physically and mentally and so incredibly hard as her mum to not know how to fix the situation. I couldn’t make any promises about Matthew coming home because I didn’t really know what was going to happen. All I could do was sit beside her in limbo and wait for the professionals to give her the good news.

If you are a grandparent of a baby on the neonatal unit, the best thing you can do to help is to support your own child through the experience. They are usually going to want to spend as much time as possible with their baby, especially if it is a fair distance from home. Support them by helping out with the areas of life they no longer have time for like house work, shopping and preparing meals. Coady wasn’t eating properly because she didn’t have time to shop or cook. Leave home cooked meals they can reheat in their fridge.

Also, try to co-ordinate visits to the hospital from family and friends. It can be lonely and isolating on the neonatal unit so visits mean a lot to the parents, although make sure you check visiting hours and whether your child is feeling up to the visits.

As difficult as it was to watch Coady and Matthew go through this experience, I have never been more proud of my daughter. She stepped up in a big way and continues to fight for Matthew to this day. My grandson couldn’t have a better mother and I can’t wait to see what the future holds for them both.

If you have been affected by any of the issues mentioned in this post and would like support, you can call our helpline on 0808 801 0322 or view our online support pages.

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