'This is NICU' filmstar: Audrey (26 weeks)
The arrival of our little girl Audrey at 26 weeks was totally unexpected. She was a much longed for baby and we had a number of rounds of IVF before we were finally successful with our fifth and final embryo. It was an anxious pregnancy but everything seemed to be going well until one weekend when I started to feel quite unwell.
Even after a visit to my GP I had no idea how quickly everything would escalate; I was referred to the hospital immediately and assumed I would be monitored and possibly kept in to check on the baby. I arrived at 11am and told I had suspected pre-eclampsia. This was quickly confirmed, alongside a diagnosis of HELLP syndrome, which I had never even heard of. At 3.30pm my daughter was born by emergency caesarean weighing 1lb 10oz (737g). We were lucky that my husband got to the hospital in time. We heard a tiny cry when she arrived but that was just the start of a long and difficult journey through NICU and beyond.
Beyond expectations
I can’t really say if NICU was what I expected because I had no expectation at all and no time to even think about what it would be like. I was very unwell after the birth and my husband had a terrifying six-hour wait while I was barely conscious to find out if our daughter had survived. He finally went to see her late that evening. It was another four days until I was well enough to see her.
I was terrified as we approached the incubator, I had no idea what she would look like or how I would feel. There were so many monitors, noises and machines but the nurses were kind and tried their best to explain everything, as did my husband who was already much more familiar with it all by this point. I remember a nurse telling me that within a few days I’d be an expert in what all the monitors were telling us and what it all meant and all I could think was, “I don’t want to know any of it, I don’t want to learn about all of that stuff, I just want my baby to be ok and for this to be over.”
From then on it was a four and a half month rollercoaster of ups and downs and I did end up learning about it all – from oxygen sats to heel pricks, eye checks to infection markers and how to hold and care for a tiny baby. I never imagined my first few months as a mum would be spent in a hospital where I had to ask for help to hold my baby and live day by day, with no idea when we might get to go home. Audrey’s lungs were very underdeveloped so her biggest challenge was her breathing, it was a frustrating wait to wean her off oxygen support and every set back hit us hard. She also had very bad reflux so feeding was a challenge and she had to be pump fed for a long time.
A marathon with no end
It felt like a marathon but we had no idea where the end was; I was desperate to be able to go home and start life as a family of three but I was also terrified to lose the support of the hospital and the people who had become like family to us. My husband went back to work while Audrey was still in hospital and it became our new normal for me to head there each day and then wait for him to finish work and join me.
When the time came to leave we were excited but also anxious. There was a NICU outreach team who supported us but this was 2020 and not long after we got home lockdown began. Accessing support and services like the GP, pharmacy (Audrey needed special milk to help her feeding), health visitor was very difficult and we had no access to parent and baby groups or networks. My mental health suffered alot and the support was not there when I needed it either on the Unit or afterwards, this is something that urgently needs to change and there should be an automatic referral to mental health support for anyone who has a NICU stay.
To anyone in NICU now…
Looking back now there are things I would have done differently, and I’d say to anyone going through NICU now:
Ask questions, none of them are silly questions or too small to matter. Ask the nurses, ask the doctors, ask to see the doctor if you have concerns and ask for help whenever you can.
Whatever pattern and schedule works for you in terms of seeing your baby is the right one, don’t compare to what other parents do – the way you want to do it, the amount you want to be involved and the way you want to bond with your baby is the right way.
Talk to other parents in the unit, it will help to share and they know what you’re going through.
Be kind to yourself, take a day and a time and reflect on how far you have come – keep going, one day at a time.
Fighting for change
Audrey is now six, it was a hard journey but we got there and we could not be more proud of her and of us for getting through it. I’ve learnt that the help you need may not end when you leave the unit so keep asking for support and talk to others who understand. It took a long time for my mental health to recover and that is why since NICU I have tried to support charities like The Smallest Things to fight for changes to make things better for others who go through it. It’s a life-changing experience but it there is life and happiness beyond NICU.
Thanks to Michelle for sharing Audrey’s story and video for World Prematurity Month 2025