It's not normal, but it will be okay – Vicky’s story

Vicky reflects on the ways in which having a premature baby turns what most new parents take for granted into both challenges and extraordinary gifts.

When I first arrived on the neonatal unit, it was like something out of a TV drama. There were doctors and nurses everywhere and so many alarms and monitors with numbers I didn't understand. The room's blue haze was a constant reminder of where I was for the rest of my journey on the NICU.

While the room was full of bleeps and noises and staff busily deciding on what course of action to take, all I saw was my baby. 24 hours before, that baby was safely inside my tummy, kicking me so hard I thought she must be nearly full-sized. I wished I could feel that kick again so I could feel like my baby was safe and that I was still looking after her.

All I could think – all I had thought since my contractions started – was that this was my fault. For some reason I couldn’t keep my baby safe inside me. I couldn’t protect her from all the prodding and poking or from having to fight for her life.

The midwives, who were already referring to me as 'no longer being pregnant', put me in a side room so I wasn't surrounded by other mums happily with their newborns. Without my baby with me, I felt redundant.

I heard other babies, who seemed so much bigger, cry out and I longed to hear my daughter make the same noise. But she was too tiny, too exhausted and fighting far too hard for every breath to cry.

After a day or two of going back and forth between the NICU and my hospital bed, feeling guilty every time I left the unit to get food or have a shower, I was discharged. Nothing could have prepared me for having to walk out of the hospital without my baby, leaving her on a ward surrounded by strangers who I had to trust with her life.

In time, those strangers became familiar faces – they made me smile when I was low and they talked to, and cared for, my baby just like I would. Those strangers saved my baby's life and they became friends.

When I was pregnant, I dreamt of when my baby would be born, of taking her home and dressing her in outfits. I had picked a going home outfit especially. But her skin was too delicate to wear clothes. I had to be careful even touching her. To help her skin continue to form, her incubator was set to a high humidity, just like a rainforest. I prayed I'd be able to put a vest on her one day. But what size would that vest be? And where would I buy it from? How would it work with all the wires? How could I ever dress such a tiny baby without hurting her?

I didn't want to tell many people that my baby had arrived in the world. It wasn't because I wasn't proud of her or didn't want to celebrate her birth. But each day, I woke up wondering if she'd survive that day. I didn't know how to announce her birth and potentially have to explain that something terrible had happened. I think I also felt shame – shame about having been unable to keep her inside me for nine months. I worried I'd be announcing that, by having her early, I had failed.

The first time my husband was able to hold his firstborn was beautiful, but painful and still haunts me. This wasn't the way I was supposed to be giving him this amazing gift.

Her tiny stomach wasn't ready for milk yet – she had to be fed through tubes first. Then I had to try to express milk to see if her tummy could take it. Expressing is hard enough for any new mum, but even harder when your body isn't ready and your baby isn't with you. So the nurses suggested I try to do it while looking at a photo of her. It felt like one of the most unnatural and saddest things I had to do, but I did it because producing that one millilitre of milk, which took twenty minutes, was the only thing I could give my baby.

I can tell you, most women have sobbed when exhausted at 2 am, having spent twenty minutes hand expressing, they have finally spilt that gold dust of one millilitre of colostrum. I struggled to accept that I wasn't able to produce enough to keep up with the demand so she had to move onto formula.

I really struggled to accept comfort and reassurance from people around me. Those who said that I could at least get some sleep while my baby was in hospital were wrong. I couldn't sleep because, first, I had to express every three hours to encourage my milk to come in and, second, I was always half-waiting for a phone call telling me something was wrong. When friends and family told me everything would be okay, I felt like I was screaming inside, because they couldn't possibly know that everything was going to be okay.

Nurses and doctors tried to reassure me that this was all 'normal'. But it wasn't: it isn't 'normal' to have a baby in a critical condition and wonder every day if she will survive; it isn't 'normal' to dread the phone ringing in case it is the phone call; and it isn't normal to see a mass of doctors and nurses working on your baby to save her life on more than one occasion. That shouldn't be anyone's experience, let alone 'normal'.

Days, weeks, and months went by. Babies came and went. We moved around the room into different cubicles. But we were still there. I couldn't imagine it ever coming to an end. I didn't dare let myself imagine her at six months old sitting up for the first time, or aged three, running around the garden with her siblings, laughing innocently with the sun on her face. The darkness told me we'd never get there.

But then, tiny step by tiny step, the darkness lifted. She started to require less breathing support. Then she only needed breast milk so the longline which gave her extra fluids could come out. Eventually she was able to breathe and feed for herself, so her cannula and all the tubes around her face were gone. Finally, I could see her face properly. Finally, we could go home.

After having a premature baby, you will never be the same again. But you will heal over time. You will learn that none of this was your fault.

And when you are home with your little one, you will appreciate hearing her cry in the middle of the night. You will cherish being able to hold her whenever you like, being able to walk around the house with her and sing the same song you sang over and over in the hospital. But this time you’ll be rocking her to sleep in her own cot, in your own arms, in your own home.