Before the NICU - 5 Things I Wish I'd Known

Before the NICU - 5 Things I Wish I'd Known

I was in hospital for a week before my premmie was born, for most of that time I held onto a little shred of hope that I’d be discharged to wait out the last few months of my pregnancy at home. It may seem weird but during that week I didn’t ask Google about outcomes and complications, learn NICU terminology or read other parents' stories about their early babies. Despite the nurses playing us a DVD about the neonatal unit, it still felt completely surreal that our baby was about to arrive three months early. My ante-natal classes weren’t scheduled to start for another month, everyone else I knew had their babies after 37 weeks and I hadn’t known what a NICU was until the day I was admitted! Occasionally in the delivery suite one of the midwives would ask if I was ok or if I had any questions, but in my state of denial (or maybe it was self-preservation) I found it hard to imagine what might be ahead for us.


At 26+2weeks our tiny boy made his entrance to the world and we discovered the NICU - our baby’s new home until he grew strong enough to leave with us. Our premmie was our first baby, which in some ways was a blessing because we had no expectations of what it was like to have a ‘regular’ newborn, let alone a fragile little baby that would need months of intensive care. As a first-time NICU mumma though, I wish that someone had told me a few things about what I was about to experience:


You’ll be an emotional mess (and that’s completely ok). It's normal to feel scared and anxious, to grieve for the last few months of your pregnancy and the birth plan you never got to experience, and to even feel guilt over your baby being born so early. Always remember these words: this was not your fault. It’s difficult to see and hear other newborns in the maternity ward, and even months later you’ll probably feel a bit jealous of those that have healthy full termers - again this is totally normal!  At the same time it’s ok to be happy and excited that your baby is here, not to mention being incredibly proud of your little fighter! Having your baby in NICU is traumatic and stressful, so be gentle with yourself and allow yourself time to process those emotions instead of bottling it all up. Keep a diary, talk it through, ask the nurses or social worker if there’s counselling you can access.


It’s never a straightforward journey. There’s a pretty common saying that ‘NICU is two steps forward and one step back’. Look for the good moments, take plenty of photos, and celebrate each milestone because they’ll keep you going through the tougher ones. Even though my baby was relatively healthy for a 26 weeker there were plenty of bumps along the way. On the days when he wasn’t coping very well there were signs that he was improving in other ways, like gaining a few more grams or maintaining his temperature. It can seem like slow progress, but all those tiny achievements are steps in the right direction – it just takes time!


The day you go home is a really tough day. Of everything, this day is probably going to be right up there with the worst of them. After nearly 2 weeks of hospital food and sleepless nights surrounded by new mums and their crying babies, I was longing to be back in my own home, but at the same time I still should have been almost 27 weeks pregnant. Even though in the back of my mind I knew that I’d soon be discharged nothing prepared me for that afternoon. Walking out of the NICU without my little baby was gut wrenching, it was like a huge part of me was lying in an incubator and every step took me further away. I barely held it together on the walk to the car, then bawled my eyes out for the drive home and most of that evening. Of course I had the unit’s direct phone number and could call at any time of the day or night to check on my baby, but it wasn’t the same as being a quick walk away down the hospital corridor. All I can say is make sure you have some photos and videos of baby saved to your phone, and pack the tissues xx


Take care of yourself, and ask for help. I actually had no idea that after giving birth I’d need to express every 3 hours for the next 12 weeks, and keeping up with this routine is bloody hard work! Expressing seems like it’s one of the few things you can do for your baby but it didn’t take long for me to become completely exhausted. By the time I dragged myself out of bed, got the pump, expressed, cleaned everything up and put it back in the steriliser I was lucky if I got 2 hours’ sleep before starting all over again. On top of becoming a milk-making machine, there was still the usual household stuff like grocery shopping and cooking meals, and of course the cleaning and laundry piled up too! Simple things like having some ready to heat dinners are a life saver (if anyone offers to drop off food then definitely say yes!), and tidying up the mess can wait. It can be hard letting things go but you really need to put yourself first and rest – don’t be like me and end up with shingles!


Being a NICU parent doesn’t stop after discharge. When you’re in the unit your goal is bringing your little baby home, but finally leaving is a huge step. There's no nurses for back-up, no monitors (we purchased an Angel Care for peace of mind), and a lot of babies do come home with 'extras' to manage like oxygen or an NG tube. Thanks to a last-minute change of plans our boy was discharged on low flow at the begining of autumn, we knew that for the first two years premature babies are at high risk of re-admission for lung infections so we basically isolated over that first winter to try to keep him healthy. After he was weaned off oxygen he still had follow ups scheduled with the paediatrician, child development therapist, hearing and eyesight checks, it isn’t the same as coming home with a healthy newborn! Trust your instincts, don't feel like you need to take advice from other people, and try not to compare your baby to others - they all reach milestones in their own time.


I truly believe that you can never be fully prepared for the NICU. It doesn’t matter if you’ve had a week or a months’ notice, or even if you’ve been through it before, each baby will have their own unique challenges to face. If you’re just starting on this journey, it’s probably one of the hardest things you’ll ever have to do, but you CAN do this. Take each moment as it comes and remember that your time in the neonatal unit won’t last forever.


“Strength grows in the moments when you think you can’t go on but you keep going anyway”


Posted: Saturday 1 June 2019


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