“The whole time in NICU felt like a daze” - Bowie’s story

I have been a first-time mum twice in my life. It feels odd describing it that way, but the experience of NICU, and all that followed for my second baby was so vastly different that I found myself in unchartered waters all over again. This time it was even harder.

Both my babies were born "late". Both at 40 weeks and 13 days to be exact! So when my second baby was rushed to NICU straight after being born, then subsequently transferred to another hospital’s NICU for care before she was even a day old, I can honestly say I never felt so alone.

Our family was split; I stayed in the hospital, sleeping anywhere I could including in the children’s ward shared parents' room (the “practice going home room" as I called it) but also in hotels, which were so expensive being in central London that family had to help us out. Finally, when there was no other choice, I even slept in my car. My husband needed to be at home for our three-year-old who was so confused by the situation. He didn't understand why we couldn't just come home like in all the stories we had read to prepare him for his little sister.

I noticed a difference quickly between my baby and her ICU roommates. Nurses often commented about looking after the "big one". As she was full term, she looked huge compared to all the other babies on the unit. They were all premature and tiny and it added to our feeling of not really belonging. These tiny babies needed so much support but would eventually get bigger and go home. The realisation suddenly dawned on me one day that my baby didn't just need time to grow like all these other babies, we were in a much more precarious situation. I don't think I slept for the first three days following giving birth. When the nurses would force me to go and rest, I would often hear her crying from down the corridor (premature babies do not really make any noise), but full term babies are LOUD!

We were given milestone cards that I remember at the time really upset me as they were clearly for premature babies. "Today is my due date", said one and another said, "Today I had milk without a tube" - this really stuck with me. When we left the hospital, I was still feeding my daughter breastmilk through an NG tube as she just couldn't use her mouth. I often describe the time as a whirlwind. I say I gave birth and haven't sat down since and that's really what it feels like!

The whole time in NICU felt like a daze and I always remember the strangest feeling I had when I left the hospital to grab a coffee. Looking at everyone bustling along the streets, going to work and living their busy lives. I felt frozen in time, like the world had stopped and it seemed so strange that life for others continued when ours had ground to a halt.

Weirdly, visiting was often the worst time for me, every time I saw my son I would cry uncontrollably and absolutely ache to just go home. I remember saying to my husband I was scared that if I went home even for one night I would never go back to the hospital. The gravity of the situation was absolutely crushing. I think I was just running on empty, pumping milk, researching conditions and medical phrases, trying to sleep and also keep going with swollen legs and all that comes physically after birth. It was definitely some kind of autopilot and a bit of a blur now to be honest.

My advice for others who find themselves in a similar situation would be:

If you have help - family friends etc use it! All of it, don’t struggle alone if you don’t have to. And if you don't have help, organisations such as Bliss will help you get through it. This time is not permanent, you will move on to the next phase eventually whatever that may be.

As soon as you can try to find your group on social media - HIE groups on Facebook were my go-to places and still are now.

If you need support afterwards for your mental health don't wait, get help. I had PTSD afterwards and I hoped that the feelings would go with time, but they didn't. After EMDR therapy I can say I feel more human again.

I still feel a small shudder when I hear the intensive care machine beeps on television though!
Finally, I'd like to add, not all stories have a "happy ending". There’s a lot of focus on milestones and healthy babies and toddlers. For some of us these milestones are never reached and that's ok. We are still living our best life (well as best as can be during a pandemic, but that's a whole other story!) And your experience may be different, but that's not necessarily a bad thing.