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Six Life Lessons From the NICU

26/05/2016 17:07 | Updated 26 May 2016

I closed my eyes. If I couldn't see then I could pretend that I wasn't there. Then I wouldn't feel like I was intruding on a grief so raw I could almost taste it deep in my throat. I was helpless. And useless.

But there was nowhere to go or hide. Not in the neonatal pump room.

Side by side we sat, exposed literally and metaphorically, hooked up to machines pumping milk into bottles. Milk that they said was vital medicine now - medicine for our ailing, failing babies.

For every nine families that walk out of the door of the maternity wing elated yet flagging, one will spend time in the neonatal unit. And within each unit is this room. A room that if it could talk would tell you such tragic tales. That has witnessed the deepest depths of despair.

I didn't know this lady. Yet I knew this lady too well.

She had told me her tale in a numb monotone the day before. How she'd been blue lighted across the county to give birth prematurely to her longed-for twins. How one had later died and the other was now locked in a private turbulent battle to survive. She told me all this in the way you would tell someone you'd lost a tenner at the shops. Quite bummed out at her bad luck. She was not so numb now. Now she felt every painful emotion all at once. There was nothing I could do for her except sit silently beside her as I double pumped milk for my baby who was hooked up to similar machines in the next room.

This is just one of many sad stories I heard and witnessed during our 17-day stint in the neonatal unit. Quite a short visit compared to many, but at the time it felt like a lifetime.

Five years on, I can still recall the smell of that room; the beeps of the machine; the strange comfort of the sterilizing routine; feeling shy during kangaroo care in crowded wards; the quietness of quiet time.

The heart-broken memory of leaving hospital to go home without my baby; the rush of emotions as I drove back to the unit in the early morning light wondering what I would find when I walked back in, despite calling ahead before I left home each day.

I can still feel that coldness (such indescribable coldness) of walking around my house with empty arms after the heat of pregnancy and the utter loneliness of setting an alarm to pump milk at 3am while the rest of the world slept on.

A neonatal spell is an experience like no other. No matter how long you spend on the unit, it leaves an indelible mark. It changes you in many ways and shapes your attitude going forward.

Here are just a few things that I learnt:

Things can't always be fixed

When something bad happens to a loved one or a friend, it is human nature to want to try to put things right. But you know what - sometimes things can't be fixed. And that is that. I met a lovely lady on one of my first days in neonatal who told me that her son had been starved of oxygen at birth and as result had suffered irreversible brain damage. There must be a way to fix him I said arrogantly (and ignorantly). I wouldn't accept it. It was too sad. And unfair. Six weeks in, she was well versed in this reaction. With a dignity that left me shamed she stated quite kindly, but firmly: no, we can't fix this.

Shut the hell up and listen
It was in the neonatal unit that I began to learn the fine art of shutting the hell up and just listening. The temptation when someone is telling you their troubles and fears to go "hey yeah me too" and then share your experience is strong. But there is a time and place for it. Empathy is sometimes not necessary - sometimes someone in pain just needs a willing ear.

Terrible things happen
Horrible, horrible thing happen all the time, yet there is nothing rawer than sick and dying babies. And in the neonatal unit you are surrounded by them. If you sit there long enough you hear the alarms going off and the medics swooping out of the room en-masse to try to save a life; you see the man and woman in the family room inconsolably clutching at each other locked in their own private hell; you notice that the bedside space of the baby in the corner is empty again for the 10th day in a row and the nurses are taking turns to dole out the cuddles. Terrible things happen and that is just life.

Don't sweat the small stuff
The gift of perspective is never greater than when your child is ill. All those little things that bothered you suddenly disappear. I remember a friend telling me that I would have all the sleepless nights to look forward to when he came home so to enjoy the nights when he was looked after by the nurses. I longed for the sleepless nights as it would mean he was home beside me and mentally promised myself that I would never ever moan about stuff like that ever again. Obviously I did because I am not from Stepford. But I never saw it as a personal witch hunt from the universe in the way I did with my older two. Don't get me wrong I love a groan as much as the next person but some of the things that people grumble about are, still to this day, a bit alien to me. And I'm grateful for that.

Don't compare
It is impossible not to these days especially when picture perfect presentations of people's lives are being thrust at you from all directions. Everyone else's lives always seem better on paper. I used to get massively jealous of all those families I saw leaving the hospital after seemingly uncomplicated deliveries. How I longed for their easy lives. How naive. Who am I to guess at strangers' lives. Everyone has their own crap and all crap is relative.

As one door shuts...
Things aren't always as I expected with my child. Many times over the past five years this has made me cross and sad. I remember feeling so cheated of his first few weeks of life during our hospital stay, but the life lessons that period taught has held me in good stead for the rocky times that came. Now I am sort of grateful for the time there. Things often have a way of working out just fine. And it is amazing how strong you find yourself to be at times.

So if you are currently down in the pump room, you don't know it yet but you are now part of a new club. There is a strange solidarity between us neonatal mums. We try and look after our own. You can't really explain it properly to people who've not been there. But know we are all rooting for you.

I can't tell you all will be okay because I don't know that.

But I can tell you that our okay was not the okay we wanted or expected, but it is a lovely different sort of okay all the same.

In fact our okay goes way beyond okay almost every day.

So keep on hanging on in there. You've got this.

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