‘After overcoming enormous hurdles; it ends up being small things that trip you up' – Peter’s story

High Dependency

Peter's twins were born at 29 week. He shares how he and his wife found different ways to manage.

I remember vividly the first moment I walked into NICU. The calm room filled with blue lights and the steady beeping of machines tracking the babies’ sats and heart rate. Two rows of tiny babies, about twelve in total, in perspex boxes lined the room. Two of them were mine.

Seeing Iona for the first time was totally overwhelming. The box looked huge compared to this tiny baby, there were wires everywhere and she was intubated, but all I could see was my baby girl. Then I saw Olwen, who was smaller still and I felt equally moved. They both looked so calm, their chests working hard to breathe, occasionally twitching as though dreaming peacefully. Seeing their calm determination gave me the first real sense of hope I had felt so far.

Despite being born at 29 weeks, this was in many ways better than many of the scenarios we had predicted. From early on in pregnancy we knew that we were having identical twins and that they shared a placenta. This introduced all manner of possible complications, including twin-to-twin transfusion syndrome (TTTS) and we were told there was a high chance that one or both would not make it.

We had endured six months of anxiety, living from scan to scan and trying our best to carry on with our lives, including being parents to our three-year-old boy. There was a brief window around the 24 week mark that we thought things might be ok and we may even reach term. At our 29 week scan, it all changed. Olwen had barely grown for two weeks. Our only option was delivery.

First Cuddle Outside Womb

When Iona was born, we heard a small cry, which is just about the best sound I ever heard. We briefly saw her and she was bigger than I had expected. A few minutes passed and no one was saying anything about Olwen. I’m still not entirely sure what happened but eventually we were told that she was delivered and stable. We named them there and then, as they were both whisked away.

Shortly after arriving in NICU, we were told that they had overcome the biggest hurdle - birth. The next 24 hours would be critical too but the signs were good. Five days after our girls were born, we finally got to hold them. I remember my wife Felice holding Iona for the first time saying she expected her to feel fragile but she actually felt strong. At this point we felt optimistic and that there were many reasons to feel happy in this place that everyone seems to fear and avoid. But this was just the beginning of our stay in NICU, which would last for a total of 94 days.

We soon settled into a routine where my wife would head to hospital at dawn and I would drop our son at nursery and go to work. Felice would collect him and then I would head to hospital straight to work and come home late. Felice would stay over at hospital whenever she could. We remained positive and had a few visitors which was always welcome and the girls seemed to make steady progress.

Slowly mundane things like money, food, work, traffic, social isolation and all the things that you have to do just to stay afloat became a colossal effort. After overcoming such enormous hurdles - pregnancy, birth, intensive care - it’s amazing how it ends up being small things that trip you up

Special Care

I began to realise that my wife and I were coping in different ways. She became even more immersed in the hospital, trying to spend as much time with the girls as possible and having the occasional emotional outburst. Meanwhile I became focused on practicalities, like work and preparing the house for their return. When I did arrive at hospital I didn’t want to speak to anyone. I just wanted to hold my girls and then go home. It may have been healthy to let my emotions out and deal with how I was feeling there and then but my emotions felt muted.

When the girls were in special care it felt like the door was right there in front of us but we had no idea when we could go through it. Just as we were beginning to think they were nearly ready to come home, they contracted a virus and developed bronchiolitis. They were back in incubators. The hope of getting them home before Christmas disappeared. I think for me, this was the hardest bit. After months of trying to remain positive, there was just nothing left in the tank.

Christmas came closer and we made as much effort as we could muster for our son’s sake. Then, on Christmas morning, Felice called from hospital saying the twins could be collected. We were there in minutes and were welcomed by a team of NICU nurses and doctors wearing Santa hats with smiles on their faces. We drove them home and put them under the Christmas tree. We made it.

Over the next year it gradually dawned on me what we’d been through. I would tell people about it like it was the most normal thing in the world and their faces would reflect something very different. Approaching their first birthday, the reality of what we’d been through began to descend on me. I found myself reliving many of the moments that really impacted me. I found myself getting angry over things that previously wouldn’t have bothered me.

It was this out of character behaviour that made me think something was wrong. Was it PTSD? Was it ‘burn out’? I didn’t feel like there was an appropriate diagnosis that accurately explained how I was feeling. My experience felt so unique to me that it didn’t feel like there was an obvious route to follow. It was an isolating feeling.

Eventually I saw my GP who suggested Cognitive Behavioural Therapy (CBT), which I think would have been useful but it seemed like a big commitment. I just wanted a way to move forward. In the end I tried an app called ‘Headspace’ which teaches mindfulness techniques. I found that useful as it gave me perspective on my own emotions and most importantly, helped me find acceptance.

Shortly After Getting Them Home

I think people are largely oblivious to what the reality of NICUs are like and so it can be hard to know what to expect or how to support loved ones who are there. They are a place of love, kindness, miracles and also at times boredom, stress and tragedy.

Every parent and baby there has their own story, their own unique set of challenges and their own way of coping. It’s an extraordinary situation to be in, so it’s not a surprise that it impacts on people in big and unexpected ways, including on mental health, so it’s good to be aware of your well-being.

I would say to fellow parents - be kind to yourself, have faith in your baby and in the nurses and doctors caring for them.

To families of NICU parents I would say that we appreciated every gesture of support, however awkward or badly worded, it’s just good to know that people are there if it all becomes too much. Practical help also helps take the pressure off too.

My girls are so full of energy, personality and joy, and while I’m not in a hurry to do it all again, I can say resolutely that they are worth it.

Did you find this story helpful? Listen to Peter talk more about his experience in our podcast – NICU, SCBU and you. You can also find more information and support on this page, including how you might be feeling, what support you can find and how to support someone else.

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