Today is World Prematurity Day. Throughout this entire week, to mark this special day, we will be publishing stories of and by NICU parents and families.
Alana Romain writes about her own Rockstar Preemies and volunteers her time in the NICU to help other preemie families. She has graciously shared this post with us. Thanks, Alana!
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When a healthy full-term baby is born, there’s no doubt over how to respond. We congratulate the new parents, coo over the beautiful new life that’s been brought into the world. It’s joyful, exciting. But when a baby is born prematurely, it’s hard to know what to say. Is it happy news, or sad? Do we celebrate? Pass around baby photos?
Having a premature baby is heartbreaking. You feel scared, and helpless, and anxious about the future. After spending over 100 days in the NICU with my own children, Reid and Madeleine – fraternal twins, born at twenty-five weeks gestation – I can easily say that I wouldn’t wish that experience on anyone. So I understand the sad looks and the “hang in there” hugs, the loved ones (and sometimes strangers) sending prayers and well wishes. It’s hard, and it’s sad, and we really do need the love and kind thoughts and encouragement. But there’s one thing that nobody tells you. And that is that having a preemie is still really, really wonderful.
If you have a baby in the NICU right now, or if you’ve recently brought your baby home, I can imagine that it might be very hard to imagine feeling like there is an upside to what you are going through. And, really, that’s because right now there isn’t an upside. Life as a NICU parent is not easy, and it’s impossible to relax until your child has finally been discharged home. The transition of taking your preemie home is still difficult though, a huge, scary time full of medical worries and second-guessing your own judgement and maybe adjusting to life at home with oxygen tanks and g-tubes and lots of medication and doctor’s appointments. Preemie parents know better than anyone else that the complexities of prematurity do not even sort of end at discharge, and that can be a difficult reality to live with.
I often think that, at first, having a preemie is like holding a scale in your hands that is weighted on one side only, with bad experiences and fears and loss. Eventually, and very, very slowly, happier moments begin to creep in, weighing down the other side of the scale, and that keeps happening, more and more, the further out you get from the day your baby was born. Madeleine and Reid are nineteen months corrected now, and thankfully, the happy side of the scale has become very heavy, allowing me the chance to heal, just a little, and look forward to the future with a bit less worry that more bad news is just around the corner. But because of that scale, the balancing out of good and bad, of pain and joy, I’ve also been able to realize that, as parents of premature babies, we may have just been given a gift that full-term parents haven’t.
Preemie parents know loss. The loss of the dream of a healthy pregnancy, of a big, pregnant belly and a fat, crying baby, and the experience that we thought we were going to have that was going to look like everyone else’s. We know fear and helplessness, wanting so desperately to help our children and take away their pain, wishing we could do anything to make sure they’d come home with us when this was all over. We know what it’s like to not know what our future will look like, what our children’s futures will look like, knowing that maybe it will be much harder than we ever imagined.
But we also know what it’s like to look at an impossibly tiny baby with paper-thin skin and eyes that can’t yet open, attached to machines and IV lines, and still honestly feel overwhelming love, still honestly believing they are the most beautiful being that ever existed. We also know what it’s like to find joy in the tiniest milestones, such as gaining enough weight to join the ‘kilo club’, of moving onto CPAP, or wearing clothes (finally!) for the first time. We know what it’s like to sit and cuddle our babies skin-to-skin for hours on end, of hooking ourselves up to hospital breast pumps no matter how much we hate it because it’s one of the most important things we can do to help our children grow. We know what it’s like to love someone so much that we would give anything to see them healthy and happy. We know what it’s like to realize, finally, that it doesn’t really matter if your child has learning disabilities or motor issues or vision problems, or if they take forever to learn to walk – or even if they never learn – because we know that, as long as they live, we’ll figure the rest out. We know that no matter how frustrated we may get when they cry or yell or throw things or climb on something they aren’t supposed to climb on, there’s still always a part of us remembering the time when their lungs weren’t strong enough to cry, and we didn’t know if they’d ever yell or throw things or climb. We know that every milestone, whatever it looks like and whenever it’s reached, is a celebration. We know that, however overwhelming this parenting thing can feel sometimes, our child is one more child that could have died but didn’t, and that the rest – any little tiny thing we get on top of that – is just icing on the cake.
There is a lot of variation in preemie outcomes, and some parents have it easier or harder than others. Some of us struggle more, some of us have a harder road to travel, and maybe the blessings aren’t always easily apparent. But the one thing I know for sure that we all share – the one thing that the doctors and nurses, our families and friends, and all the other moms and dads of the world can’t truly ever understand – is that when we look at our children (our perfect, gorgeous, amazing children) we see warriors, babies who have fought harder and overcome more than we could possibly have imagined, and that getting to be their parents is the best, most incredible thing that could have ever happened to us.
Being a preemie mom has made me a better parent and a better human being. And I have a feeling it’s made you one too.
Rockstar preemies indeed!