Premmie parents face different parent challenges from the get go and can be misunderstood by parents who haven’t got the shared experience of a Neonatal Intensive Care Unit journey. Taking our tiny ex 26 weeker baby daughter to her first pediatrics appointment post hospital discharge (Inside My Womb), I feel our journey is far from over. It is like exiting a long dark tunnel that has confined us for so long narrowing our focus to our NICU crib and all the hurdles needing to be overcome before our sweet baby is released. And now as she has been discharged from the hospital confines that limited our time with our baby, we are still travelling along the same narrow road, only there is light around us and in the distance we can see the rest of the world, slightly out of focus, but its still there. One day we will meet with the outside world again, but for now its baby steps.
Being a NICU parent is all consuming. As we slowly snaked our way around the ward, our baby moving between nurseries from the Intensive Care end to the Special Care section, as she grew and gained strength and passed tests it almost felt like we were in the Matrix. You know that scene, where Keanu Reeves contorts his body and bends backwards to dodge bullets that slice through the air around him in slow motion. Having a baby in the NICU is a bit like that, each day we are faced with new challenges as our baby fights for life. We were lucky, only being grazed a few times as our daughter’s struggle became too much on a few occasions and she required blood transfusions and extra invasive testing. She was literally brought back to life after birth receiving chest compressions and oxygen and spent 12 weeks growing in a plastic womb outside my body. We are lucky she is strong, lucky she is a fighter, lucky we only got hit towards the end of our journey with a diagnosis of retinopathy of premmaturity and osteopenia.
Moving to the special care end of things, the focus became more about normalising life for our baby and her gaining sufficient weight to be discharged home. I watched her bundled and strapped into a small humidicrib mounted onto an ambulance stretcher to be moved to a smaller hospital for the final stretch of her hospital journey. I shed a tear as we said goodbye to the safety of the NICU and thought to myself that this is the first time she will see sunlight, the first time she will be outside, and only briefly and through a plastic box. And when we arrived at the special care nursery shock took hold as slowly her probes were removed, monitors switched off, and I was actually able to pick up my baby without leads attached. And whilst I was scared of the changes at first, asking the nurse with desperation “But how will you know she is breathing?”, it quickly became such a novelty to be able to pick up my baby without permission. Even if I had to do so methodically with the hospital process of temperature checking prior to lifting her up into my arms.
Then we entered an episode of The Biggest Loser except it was the opposite, so more like The Biggest Gainer. I spent weeks robotically going in to feed my baby, whilst still pumping milk in between as she was too tired to feed most days. I would hear other mothers tell their baby “Wake up and eat. Eat baby EAT!” as they desperately wanted their newborn to gain weight so they could begin life at home with their little one. Slowly our baby began to feed, slowly she gained weight and eventually the day came when she was finally ours. We actually had a baby! It wasn’t just a dream, she really is ours! We had to return for a weigh in two days after discharge, and I was terrified they would take her back if she hadn’t gained enough weight. At home we watched her, mesmerized by her beauty, her tiny perfection, and then looking at the clock we would gently wake her for feeds. I finally had my baby, no way did I want another chapter of hospital.
When reintroduced into the real world as a premmie parent I feel I should have a giant sticker attached saying “26 weeker” as a mark of my paranoia and concern about germs. So excuse me if I cringe when your kid coughs, or go white as you wipe your toddler’s snotty nose. I’m a prem parent. I have seen my baby fight for her life and it’s something I never want to see again. So don’t take it personally as I disappear into the distance and make for the exit after assessing the potential dangers in the area, one of which is your sick kid. I’m simply doing what any good parent does, I’m protecting my baby. And being a premmie parent, well germ paranoia comes with the territory. Oh, and any thoughtful parent protects other kids too, by keeping their unwell kid at home, just a thought. So yes I might melt away into the far reaches of the playground when your snotty nosed kid approaches. Don’t take it personally when I wince as your kid wheezes away. And when you come to take a sticky beak at my 4 month old baby who is the size of a newborn because that’s exactly what she is adjusted age, if I don’t move the muslin wrap creating a barrier between her and the outside world there is good reason. Since leaving hospital we have been hermits, as much as one can be with school and preschool kids. We know if our premmie gets a cold it could spell a hospital stay and we simply don’t want to risk it. We fought so hard to get our baby to where she is, alive and at home. So if your kid has a rash we will quickly make for the nearest exit. If we see you reach for a tissue to wipe you kids nose again we will dissolve before your eyes.
Being a premmie parent now myself I have discovered that premmie parents are many things. We understand pain, both physical and emotional and both so deeply. A premature birth is traumatic, often unexpected and sometime its been known to be coming the entire pregnancy, like a ticking time bomb that if detonated too early, could end in tragedy. The pregnancy we hoped for has been taken away. We grieve the pregnancy journey we wish we had. A healthy pregnancy that went to term. Months of enjoying the sensation of feeling our baby kick happily inside us. Growing our baby bumps big and wearing them proudly. Living without fear that we might not get our happily ever after. Celebrating the life growing inside us with a baby shower. Holding our toddler, their legs wrapped snugly around our baby bump. All things most pregnant mums take for granted.
Premmie parents are forced to watch their baby fight for life from the moment they are born. We watch our baby grow outside of our womb, and can be left waiting days to touch our precious baby. We might get to hold our baby sooner than if they were a term baby but usually only for an hour a day. We go home from hospital without a baby. Each day we visit our baby and return home again, without our baby. We need to make decisions, sometimes before our baby is born regarding medical treatment. It is a special kind of magical watching your baby grow outside of your womb, but it is also terrifying and gut wrenching as you see them endure painful needles and procedures, watch their monitors and become fixated on the numbers flashing before you and realize none of this would have been required if your baby was born at term.
Premmie parents are powerful, deriving strength to carry on each day after day after day of hospital visits, doctors rounds, waiting for precious kangaroo care time, pumping milk every 3 hours and pushing to recover from birth sooner than doctors would like. And the rest of premmie parent’s responsibilities don’t stop. Older siblings still need to get to school, still need dinner cooked, clean clothes, time. So its lucky premmie parent are positive. We know there’s always someone worse off than us, we have seen them, that parent down the hospital corridor sobbing, that mother who silently sits by their baby’s crib as doctors solemnly deliver information which can’t be good as tears wet her lap. Premmie parents know how truly lucky they are. We never doubt that we are blessed, we know our baby is alive and that is really all that matters. We may be perplexed by what is unfolding in front of us, but we keep focused on the positives every step of the way. If we are able to hold our baby it has likely been a good day and whilst we cry at night for the missing a piece of our heart, after listening to other parents of newborns complain about lack of sleep, we happily set an alarm to pump at 2am, wishing it was our screaming baby we were holding and not plastic pumping parts. Premmie parents don’t take any moments for granted, we know how different things could have been so the little things about parenting that bother parents of full termers, don’t phase premmie parents. A sleep deprived premmie parent with a reflux screaming baby at home in their arms is a happy premmie parent.
And finally premmie parents are passionate. Passionate about parenting, about sharing comradery with other premmie parents, about making the path a little smoother for new premmie parents through friendship, and awareness. The journey isn’t over, once a premmie parent always a premmie parent. The world never looks the same again and the parenting is a little more precious, every moment priceless.
