Now the title gives you the impression I’m happy my boys were NICU babies. Trust me, I’m not. I would give anything to go back, to change it, so that they were both still with us, healthy and happy. So that we weren’t fighting a battle of grief while we fight a battle of feeding, so that we would have the life we dreamed of. But that’s not the reality, for us, and for so many families of premature or unwell babies.
People who mean well tell us over and over again to ‘be happy’ about this and ‘be positive’ about that, and I’m sure you understand when I say some days you want to yell at them, that there’s nothing at all in the happy and positive box right now, it’s empty!!!
However, on the days where the tunnel is black and long and the light is non-existent I have found myself focusing on 5 small things that could potentially be put into that happy/positive box to be looked at later, and maybe some of you have the same.
1. Routine- right from the minute a preemie is born they are in a strict routine, cares, feeds, meds, turns, it all happens to a timetable and continues that way whether you’re in there for 5 days or 5 months. Our Oliver came home after 6 months on a four hourly feeding regime, sleeps that lined up with his feeds and a mind and body that were so in tune to this that on the days I need to change it he struggles. But when I’m tired and stressed, knowing there’s a daily plan and that it won’t change is such a relief. When my pregnancy and birth all completely lost control I sought comfort in the control I gained from routine. There’s something empowering about knowing your child sleeps and eats at his specific times when you watch others fight to create a routine. Yes we didn’t get to breast feed, and I’ll grieve that forever, but we never had 5 hours of cluster feeding every night either.
2. Hats- I have watched so many children fight their parents as they try to put hats on them. Or rip the hats off as soon as the parent’s back is turned. It looks exhausting and stressful, especially in the winter months. Oliver has never in his life taken off a hat I’ve put on him. He spent months having his little head squeezed into a CPAP hat, had it fastened under his chin and only taken off for a maximum of 3 minutes at a time. From the day he left the incubator he has worn a hat, to help him regulate his temperature, to protect his eyes, to look cute!! CPAP kept my baby alive, but it also taught him to wear a hat.
3. Sleep in bed- it’s one of the hardest part of every day in the NICU, going home and leaving your baby there. These mum’s didn’t get skin to skin at birth, they hold their baby but it’s brief and terrifying, and then the rest of the day their baby is in its bed. I have always been a firm advocate of sleeping babies in their beds, on their backs, to keep them safe. This was encouraged in the NICU, as so many babies have respiratory struggles, and babies always slept in their bassinets and cots. There have only been a handful of nights since we have been at home that I have struggled to get Oliver to sleep in his bed. In fact we have the opposite in that he’s older and bigger now and every now and then I’d love a few extra minutes snoozing with him in our big bed. But he just cannot do it, it’s not his sleep space and he’s just so tuned to sleep in his bed that the minute he’s in our bed his eyes are open and he’s in playtime mode! When I see mum’s pacing the house because they can’t put their baby down I try to be thankful for my boy and his bed.
4. Tough- this one is such a double edged sword. My little boy is tough, and his NICU buddies are tough. But they are tough because they have been through hell. They have had so many heel pricks their little heels will be scarred for life. They have been poked and prodded by so many people they don’t have fear anymore. As parents our hearts have broken over and over again watching them in pain and struggling to breathe, or to move. Yet now, they hurt themselves and they keep playing, they get immunisations and they just smile at the nurse, they have blood tests and they play with their mobile above them, or they read books. These kids are tough. It’s amazing how resilient they are, how strongly and bravely they face each day. And I’m proud of Oliver for this.
5. Friends- this is not a small one. This is a huge one. On the hardest, longest days, when it feels like it won’t ever get better and no one else even remotely understands, I am happy I was in the NICU with my babies. I am happy because I now have a small group of friends who completely and utterly understand the things we struggle with each day. They have been there, they have done that, they are in the thick of it with us. I love all my friends and family, but there’s something different about the people you meet on your Nicu journey. So as much as I dream of going back and changing it, I would also be sad, because then I wouldn’t have met such an inspirational group of superhero parents.
Sometimes it feels impossible to see the good in the mud when you’re trudging, but NICU parents, I hope that maybe a couple of these make it into your happy and positive box so that you can take them out when you need them. Xx