"There was constant fear that something really bad might happen" - Michelle's story

Audrey was born in October 2019 at 26 weeks and 3 days, as a result of severe pre-eclampsia and HELLP syndrome. Having struggled to conceive, we had three IVF attempts in order to get pregnant. Audrey was our final embryo and despite an anxious pregnancy, we never imagined anything like this would happen. I’d never even heard of HELLP syndrome.

I had been feeling a bit unwell and went to the GP to get checked out. As soon as she took my blood pressure, she suggested I go straight to the hospital. I arrived at the hospital at 11:30am and Audrey was born four hours later. Those few hours were a bit of a blur of doctors, midwives, increasingly serious conversations, and being hooked up to more and more machines.

There was no time to really think through what was happening, we were terrified but powered by adrenaline, I think. The only clear decision I remember being able to make was that I wanted to name her before she was born, we called her Audrey, after my Nan. She was born by emergency C-section but fortunately I was able to be awake. We were told we wouldn’t be able to hold her and that she would need to be taken by the doctors immediately, but we did hear a little cry and it was incredible. She weighed 1lb 10oz.

It was another six hours before the NICU called to say she was stable and that my husband could see her. I was too unwell to go, but he returned with a precious photo and reports of how incredible the staff and the equipment were in the unit. I was finally able to see her two days later, I felt totally overwhelmed by the NICU, although my husband seemed like an expert as he tried to explain to me what all of the machines, tubes and numbers meant.

I remember a nurse telling me that in a few days I would understand it all, and I just thought “I don’t want to know what all of this means, just make sure she is ok”. I was terrified, I didn’t know or understand what we were facing. It was also daunting finding our way around the unit and getting to know how it all works, but over the course of the next few weeks, we got used to it and it became our second home.

Audrey was tiny but feisty, she had chronic lung disease, a PDA, metabolic bone disease and various other complications of prematurity. It took a long time for her lungs to develop and for her to be weaned off oxygen support. We had a number of setbacks along the way, when she needed to go back on a ventilator or back into an incubator. She also struggled with reflux, which affected her feeding and she was pump fed for quite a long time. The sheer length of her stay on the NICU was what I found the hardest, we were there for 131 days.

Seeing other families coming and going in that time was hard, and in the early days when we arrived at the ICU, we would stare through the other doors into the high dependency unit and wonder when we might get to graduate to the next room. The nursery and then home felt like a lifetime away, there were days when it was incredibly hard to believe we would get there.

I found expressing milk quite tough, but there was a lot of support on the unit. One positive of it was the chance to meet and talk to other mums in the feeding room. In the early days I was so scared of every procedure Audrey needed to have, it helped so much to hear that other little ones had been through it too. As we became the veterans of the unit, I tried to pass that reassurance on to others where I could. It was also heartbreaking meeting parents whose little ones weren’t able to make it home and who had to say the saddest of goodbyes.

The experience definitely affected my mental health both during our time in NICU and after, I had (and still have) a lot of anxiety and found it difficult when Audrey first came home. I didn’t trust myself that I knew what to do to help her and to go from so much medical and nursing support to being on your own is hard. Dealing with the impact of finally getting pregnant after so many IVF attempts and then having a very premature baby has not been easy, but we also know how lucky we are. She really is a little miracle.

Looking back now, I don’t really know how we did it. We just had to deal with it one day at a time. It felt like a marathon, but without any idea of far we had run or where the end was. Each setback was devastating and there was constant fear that something really bad might happen. I hated phoning to find out how she was in case it was bad news and I was terrified any time the hospital number came up on my phone. You want to be there all the time, but you really do need time away to process things.

Our time on the unit was tough but also very humbling, we cannot thank the staff enough for everything they did for Audrey and we met some amazing other NICU parents, who are a very special bunch. Having a baby in NICU is an emotional rollercoaster, no two days are the same and the highs can come as quickly as the lows. I have no doubt that it has changed me forever and despite being such a hard experience, it is now a really important part of our family story. We are so proud of Audrey who is now 19 months and doing really well. Premature and sick babies really are incredible, as are all the staff who work so hard to save them.