I was in hospital for a week before my premmie was born, for most of that time I held tightly onto the hope that I’d be discharged and could wait out the last few months of my pregnancy at home. It may seem weird but during that week I didn’t ask Dr Google about outcomes and complications, learn NICU terminology or read other mums’ stories about their early babies. Despite the nurses playing us a DVD about the neonatal unit, it still felt completely surreal (and pretty much impossible!) 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! In the delivery suite the midwives would sometimes ask if I had any questions but I found it hard to even imagine what might be ahead for us.
At 26+2 week’s gestation 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:
Your emotions will be all over the place, and that’s ok. Some days you feel like you’re superwoman with everything under control, the next you feel like you couldn’t possibly make it through another day. It’s normal to feel cheated of the last few months of your pregnancy, jealous of those that have healthy full termers, guilty that your baby was born too early and scared of what may be ahead. At the same time it’s ok to be happy and excited that your baby is finally earthside, and incredibly proud of your little fighter!
It’s never a straightforward journey. There’s a pretty common saying that NICU can seem like it's 'one step forward and two steps back’ and some days it really feels that way. Look for the good moments and celebrate each milestone because they’ll keep you going through the tougher ones. Even though my baby was relatively healthy for his gestation 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, maybe gaining a few more grams or maintaining his temperature when the incubator was turned down. It’s all those tiny achievements that are slowly taking you in the right direction.
The day you go home is a really tough day. Of everything you experience, the day you’re discharged 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, part of me 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 had prepared me for that afternoon. Walking out of the NICU without my little baby was gut wrenching. I had my bags and my husband by my side, but a huge part of me was lying in an incubator and with every second I was getting 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 direct phone number for my baby's room and could check in at any time of the day or night, but it wasn’t the same as being a 2 minute walk away down the hospital corridor.
Take care of yourself and ask for help. This may be coming from my 'new mum' lack of experience, but I actually had no idea that after our baby was born I’d need to express every 3 hours for the next 12 weeks, and keeping up with this routine is bloody hard work! When your baby is being cared for 24/7 by a team of nurses and doctors, expressing seems like it’s one of the only things you can do for your baby so I was determined to do the best I could. 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. Night after night, the sleep deprivation combined with stress from the NICU quickly wears you down. On top of spending a large part of my day as a milk-making machine there was still all the usual household stuff that needed doing, food shopping, cooking dinners, cleaning and a small mountain of laundry. Simple things like having some ready-made dinners are a life saver at the end of a long day - if anyone offers to drop off food then take them up on it, and unless you’re down to your last lot of clean underwear then the washing can probably wait too! It can be hard letting things go but you really need to put yourself first and rest. Please, please, trust me on this one, soon after getting my boy home I ended up with shingles!
Being a NICU parent doesn’t stop after discharge. When you’re in the unit the ultimate goal is making it out of there with your baby, but bringing your premmie home isn’t the same as coming home with a healthy newborn. Our boy was discharged in autumn along with low flow oxygen - which was a last minute change of plans as he’d already been completely off O2 in the unit. For the first two years premature babies are at high risk of re-admission with respiratory infections, so we basically spent his first winter in isolation to try to keep him healthy. After he was weaned off the oxygen there were still follow ups scheduled with the paediatrician, child development therapist, and hearing and eyesight checks. Thankfully over the next two years he was discharged from all his specialists, but he's still very small for his age and his early start to life will always stay with us.
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, all babies will have their own unique challenges to face. Along the way you'll meet the most incredible people - special nurses, past and present NICU parents - that become like a second family who will always be there if you've got questions or simply need to vent to someone who gets it. Above all, take each moment as it comes and remember 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