"Nothing is certain when you’re told your baby is going to arrive early" - Claire's story

Nothing is certain or reassuring when you’re told your baby is going to arrive early and will probably be in neonatal intensive care.

At 29 weeks pregnant, a scan showed high levels of resistance through the umbilical cord. It was confirmed that the placenta was slowly deteriorating, and our baby wasn’t growing as he should be. He was diagnosed with Intrauterine growth restriction (or IUGR - when a baby in the womb does not grow as expected). We were told to prepare for an early delivery likely to be by C-section. Our baby was too small, and my pregnancy had become a balancing act.

Nothing can prepare you for that kind of diagnosis. My body was supposed to be keeping our baby safe and helping him to grow, instead he was having to fight to get what he could.

At 32+1, in mid-December, after a week in hospital and a last-minute struggle to find a local neonatal cot, Joshua was delivered by urgent C-section. He weighed just 2lbs 13oz. The neonatal doctor bought him to me for a kiss before he was taken away to the NICU. Amazingly, he was breathing independently.

That was the start of our NICU journey. It was not how I’d expected our pregnancy to end. We didn’t have a bouncing bundle of joy that we took home 24 hours or so after delivery. Going in the lift from the post-natal ward to the NICU in the early days and seeing other families leaving the hospital with their new babies was really tough. I’d not had the huge bump of the third trimester that brings so much excitement as everyone gets ready for the new arrival. Or the water birth at 37+ weeks I’d hoped for.

Congratulations felt foreign, how was having a baby this early something to celebrate? We didn’t tell anyone other than immediate family he’d arrived for several days as we just wanted to try to make sense of what had happened and see how the first 48 hours went.

But after the initial shock wore off, I felt quite strongly that if this was how our first few weeks or months with our baby were going to be, we needed to embrace it.

Joshua carried on breathing independently and aside from needing phototherapy for the first 48 hours, and a small bleed on his brain that quickly resolved, we were able to be actively involved in his care. We learnt to change his tiny nappies through the incubator holes, became experts at tube feeding - testing the aspirate using tiny strips of litmus paper to make sure the milk was going to the right place and because he was as the consultant had predicted, ‘small but healthy’ we were able to do lots of skin to skin.

His first Christmas was spent in hospital and we were overwhelmed by the kindness of people we didn’t know - we couldn’t see his incubator on Christmas morning because of the presents people had donated.

Our journey through the NICU was a relatively straightforward one. We spent a week in high dependency, a week and a half in low dependency and a week in the transitionary care room. We were lucky enough to be given a place to stay at the hospital, to be able to be near Joshua throughout his stay made a big difference. That’s not to say it wasn’t tough, it was a hugely anxious time. We were cautious around visitors, wanting to protect him rather than introducing him to a world he shouldn’t actually have been in yet.

At 3 and a half weeks old Joshua was discharged. He weighed 3lbs 9oz. In many ways for us, leaving the safety of the hospital was when the reality of what had happened hit us. The first night at home Joshua screamed and screamed, the only thing that would settle him was a soundtrack of ICU noises I found on YouTube. People kept talking to me about how we needed to ‘normalise’ our experience of being parents now we were home, away from the monitors and data, and though they were trying to help I just kept thinking but what’s happened to us is our normal, and that’s ok.

I did spend weeks convinced something serious was going to go wrong with Joshua, to think he could be ok after everything he’d been through seemed to be setting ourselves up for a fall.

He’s been absolutely fine though. That’s not to say we haven’t faced some challenges. He was slow to grow, dropping off the bottom of the chart - and because I was breastfeeding it felt (irrationally now I look back) like my body was failing him all over again.

At 38 weeks, he was diagnosed with an inguinal hernia. As he was still only 4lbs the thought of surgery was massively daunting. The repair went well, and he coped with the general anesthetic. Then we went through it all again a few weeks later when a second hernia was diagnosed. Little fighter doesn’t quite cover it somehow!

I’ll be forever thankful to the neonatal family care nurse who saved our sanity as we navigated being on a bungee cord to the hospital. And the neonatal dietician and health visitor who have stayed in touch throughout lockdown and beyond to keep an eye on how we were all doing.

Now he is 15 months old and is walking and climbing around the furniture like many other babies his age. I look back and think we’ve been so lucky; we have a beautiful, healthy little boy and I’m so grateful that he reached us safe and well. I’m both privileged and proud to be his mum and am in awe of his determination and resilience.

But having a baby born early and admitted to neonatal intensive care is probably one of the most difficult things I have ever had to or will face. It’s not something that I’ll easily forget.