As the parent of any premature baby will tell you, anniversaries can be tough. We had a lovely party on Mr Boo’s birthday last month, but I found the run-up to the big day incredibly emotional as I thought about all that he’d come through and how far we all have to go. The Grumposaur found the day even harder and spent most of it away from the party displacing anxiety onto all manner of petty concerns. He fooled no one. Not even himself.
Then there were the one-year-ons of a whole host of other days I wish we hadn’t had to live through: the anniversary of the day Mr Boo got sick; the day we found out about the brain bleeds; the day people started floating about words like cerebral palsy, developmental delay and so forth. You don’t have to be Brain of Britain to work out why I started writing this blog the week he turned one.
But today is a truly happy anniversary and nothing (not even spending 6 hours in hospital yesterday for a non-blanching rash on Mr Boo’s legs – great timing Boo!) will stop me enjoying from this one.
A year ago today Mr Boo left the neonatal unit. He came home 6 weeks after he was born. He was 35 weeks gestation and weighed a little over the magic 5 lbs.
Of course every premature baby’s path through the NICU is different; different challenges are met and overcome, different questions are posed. But whatever these challenges are there are two questions every NICU parent asks: Will my baby be OK? When will they come home?
I asked the first question quite a lot. But I only asked the second question once. After I’d received the standard answer – we don’t know, but hopefully your due date plus or minus two weeks – I didn’t ask again. I guess I didn’t want to hear the answer or jinx things. Or maybe I just realised what an unfair question it was. They didn’t know. I just had to bide my time.
But goodness neonatal units do the weirdest thing to your sense of time. Think complicated episode of Dr Who model of time and multiply it by 25. You can spend hours (and I mean hours) in the NICU just staring at your baby and it will feel like minutes. One day after 3 hours of looking at Mr Boo and only infrequently lifting my head to pass pleasantries with the nurses I was politely advised to leave and get a coffee and go to the loo. I honestly thought I’d been sat there for 10 minutes. On other occasions, a day will feel like a week, or the 2 hours waiting for blood results will feel like a day. Six weeks is not a long time to be in the NICU. We were very lucky. I swear it felt like 4-6 months, though.
But the last 5 days passed in what felt like 5 minutes. One day it was all doom and gloom, he’s still desatting badly with the reflux, you may be near the door now but you are a long way from home… The next day he stopped desatting and a new consultant came on who asked me if we were set up for him coming home. I thought he was joking. Even as they made sure I remembered how to bath a baby, draw up and give meds through a syringe and do CPR I couldn’t quite believe we were headed home. But we were.
On May 19 2012 I packed a change bag for Mr Boo for the first time ever. I never thought this could be an exciting activity. We put Sissyboo’s old car seat in the car and drove all together to the hospital.
The unit was quiet that day and Mr Boo was alone in his room, accompanied only by a crackling radio playing a bad local station (they could at least have out on Pomp and Circumstance or something more suitable to the occasion). All I wanted, though, was silence. A world without beeping monitors and artificial light. A world where I didn’t feel I needed permission to look after my son, where my relationship with him wouldn’t be on show. I just wanted to us to be a family. Together.
Of course, it is worrying to bring home a new baby, especially one born in such difficult circumstances and with ongoing problems. But I’ve said this before and I’ll say this again: if you are in the NICU now know that whatever life throws at you subsequently it will be so much easier to deal with than when you are separated.
Simple pleasures are so life-enhancing. At home you can cuddle your baby in bed (or your baby and his big sister in our case – thank goodness for king-size beds). You can get in the bath with them. You can just be. We were all broken by our experience of the NICU but are just about as together as a family could ever be now.
Thank you, Mr Boo. Thank you for being strong, for being a tough little cookie. Thank you for being the best son and little brother we could ever have hoped for. And mostly, thank you for coming home and for the happiest day of my life.