That joyous moment when your tiny baby is handed to you, all slimy and squidgy, fresh from the womb mewing its first cries, such a momentous occasion filled with overwhelming happiness and love, the start of parenthood, the start of many memories together as a family.
But then there are those who don’t get this fairytale start, those who’s babies are born, whipped away and hours tick by before you are given any news, hours before you can glance upon your child and feel a tsunami of emotions all rising from the pit of dread in your stomach, hours, days pass by before you can even hold your precious baby.
You see being a parent to a NICU baby is a completely different ball game, we don’t have the whimsical milestones of our first picture snuggled with our baby straight after birth, our first cutesy little outfit moments after being born in between kisses and cuddles. We have NICU! Now I’ll hand it to the doctors and nurses and all the specialist consultants, they are amazing, they live and breathe your babies and without them and their support it would be an even harder process to get through but it’s just no where near ‘normal’. In fact normal is far from what we go through…until we reach a point along the NICU journey that it all becomes your ‘normal’.
I remember when our eldest was born and immediately being whisked away, a hurried shout back “oh you’ve had a boy” as he was wheeled away to the NICU ward. What was a room full of people, a hive of activity soon became an empty shell of just me and my husband, no baby, no cuddles, no first cries and kisses. Just us! It was a bizarre out of body experience, suddenly being plunged into the unknown as our 29 weeker was rushed away with a team of consultants surrounding him as he was intubated and hooked up to every machine possible.
I hobbled my way into the shower, dumbfounded with shock and numb to the world around me, my husband helped me wash as postpartum blood trickled away and yet we had no baby to hold, my belly was empty, the room had gone quiet, it was like we had entered the twilight zone. A cup of tea and a round of toast was brought to us before we were guided to a private room on the postnatal ward, it was 4 am, we were exhausted, we were desperate to hear any news, we just wanted our boy but nothing we had to wait. Fitful sleep came as we clung to each other on the bed, there were no tears left to cry, but a mindful of many questions left unanswered.
Finally at 7 am a gentle knock on the door, it had been five hours since our boy was born, “you can go and see him now”
We leapt out of the bed and hurried anxiously across the corridor and began the first of MANY entries into NICU. We put our bits and pieces in a locker, washed our hands, sanitised, pushed the buzzer and in we entered. We were led into the intensive care room, the quiet buzz of nurses going about their business with an elegant grace as they worked their way around each incubator tending to the alarms, beeps and buzzes. Five incubators lined around the room, machines on either side, a cacophony of unsynchronised buzzes and beeps, alarms sounding and constant checks being done, it felt like it was a normal day for the nurses – well it was, it was just alien to us.
Never in our wildest dreams did we think we would start our lives as parents in a room like this. We tentatively made our way to the incubator in the left hand corner, inside lay a tiny baby cradled in a comforting little snug attached to a multitude of wires and tubes. Our baby boy, there he was so fragile, so tiny, literally skin and bone, he hadn’t reached any stage of fattening up, he was coated in downy hair and helped to breathe.
“He’s doing well, he’s definitely a good size”
Doing well??? He was hooked up to an intubation tube, he had wires coming out of his umbilical stump!! As for a good size, he was tiny, 2lb 15oz was not a good size – upon reflection, this was a pretty good size, but for the months leading up to this point there were jokes I was going to have a massive baby for the sheer size of my bump puzzled everyone when I said I still had three months to go, anyway I digress.
But the look on the nurses face to our shock and worry said it all, she wasn’t phased, she had seen it all before, many a time, she knew the drill.
“The next 48 hours are the most crucial”
Oh God, we had to endure 48 hours before we could even start breathing any sighs of relief.
And that’s how our life as parents began. Every moment waiting, watching, over analysing. We very soon became fluent in NICU as we looked over his notes at every visit. What were his oxygen levels? How often had he desaturated? What had his blood tests come back as? Before too long we were reading his notes before even greeting our baby, what did we need to prepare ourselves for? What news (good or bad) was coming our way. I remember physically telling myself to stop seeing my child as a set of notes and test results but to say hello first and question later – it was hard to make that shift but it needed to be done, it became obsessive – we needed to feel normal, we needed to greet our beautiful boy first and resist the urge to read up on everything as it was easy to panic over something that actually was pretty insignificant in the grand scheme of things.
The urge as a parent to hold your child becomes increasingly stronger as hour after hour passes by and that cuddle is still far from grasp. The first time we could touch our son was a moment filled with joy and fear. At first we were not able to hold a hand or stroke his face as at this stage it could cause him pain, how could a loving touch cause him pain? It was heartbreaking to not be able to hold him, instead we could gently place our hands upon him in a containment hold letting him know we were there and that he was safe. Soon we could hold his hand or wait for him to hold ours, and when he did we didn’t want to ever pull away, we waited until he made the first move, I wasn’t letting go for a moment.
In those first few days I longed for that first hold but also anything to make the urge to feel like a mother come to light, I was desperate to change a nappy, to give him a wash, anything that was not just standing and staring through a perspex box listening to the chorus of beeps and alarms.
It was the longest three days but we finally had our first cuddle, we held our baby for the first time and it’s a moment that will be forever engrained in my memory and my heart, I had wished for this moment so much, I cried so hard in the dark nights as I expressed hoping I would get to hold my boy and that nothing would happen that would take that moment away from me.
You see life in NICU is a roller coaster it’s one step forwards two steps back, it’s exhausting and heart breaking but we find the strength to keep going.
I spent every day by my sons side, some days I was dropped off at 8am and picked up at 5pm, home for tea and then back again to say goodnight. I read by his side, wrote a diary, sat for hours watching him, stroking his hand, desperate for a moment when I could finally change a nappy, give a milk feed through his tube or do his cares.
It wasn’t long before I felt like a pro, I knew what temperature to defrost his milk, how much to draw up and when I needed to signal a nurse over to do a quick pH test. I spent hour after hour expressing by his side storing up as much milk as I could for the day he would gobble it all up and become big and fat.
The milestone moments of finding out he was no longer intubated but on CPAP and low oxygen, when he had been off CPAP for X amount of hours, when he was putting on weight and having 0.5ml of milk, then 1 ml, when we could finally put on a little vest and dress our baby, put a teddy in his incubator and have more frequent cuddles – these were our milestone moments, the ones we documented and photographed.
We watched as other babies came and went, watched as babies smaller than ours were whisked away to other hospitals, watched as other parents entered into our world, handing tissues as we pass on by not wanting to interrupt the private moment between them but then also let them know they weren’t alone. We counted down the hours and days until he could become a high dependency baby, no longer in an incubator but snuggled in a heated cot – finally that day came. A little more freedom and one step closer to going home, it was a joke between other parents and the nurses that we edging our way closer to the door.
We celebrated weigh ins exceeding 3 lbs, 3.5lbs, our tiny baby was chunking up, he had tried a few boobie cuddles as I attempted to breastfeed, every moment no matter how small was noted down in a list of achievements. We high fived as his medication doses were slowly dropping, all he needed to do was quit his desats and we could move onto the final room, we were so close…I could almost smell the sweet celebratory success of going home. But this was one of our one step forwards two steps back moments, he was ready to move into the nursery, a spot had opened up, he had been good for a while, he was ready to go. We eagerly skipped into NICU the next morning waiting to see his name proudly on the nursery board, laters high dependency we’re on our way out, but his name wasn’t there, ‘it mustn’t be updated yet’ we peered into high dependency, he was still there, our hearts sank, ‘he’s not quite ready yet, he’s still desatting too much, he just needs time’, she could see how crushed we were, ‘dont forget he’s only 4 weeks old, he’s doing really well to be where he is right now’ I know that was supposed to be comforting and thinking back we were obviously trying to rush through this moment so we could go home so we could finally become ‘normal’ parents, but it reminded us of where we were and what journey we were on.
I know it’s nothing catastrophic but we had been fortunate to ride the waves of success with (small yet massive) achievements one after the other, we had hoped that all the willing in the world had paid off and he would be a miracle baby, born at 29 weeks and out into the big wide world in 4 weeks, he didn’t need NICU he was a super baby! That disillusioned optimism was soon shot down in flames, we did have a NICU baby, he needed time, time to strengthen, time to grow – we were just going to have to wait, we just needed to accept reality. Sowe waited. Our life continued scheduled around the hospital, only going home to change, shower and sleep, other than that I was by our boys side, forever talking to him, holding him tight, recording every moment….this soon became my ‘normal’.
It was one morning as we went about our morning ritual of washing hands etc that we walked on in, into high dependency and suddenly he wasn’t there ‘shit!!’ What had happened was everything OK? Was he alright? The panicked look on our face must have been clear as day as one of the nurses hurried over with a big smile ‘oh don’t worry, you don’t need to be seeing us anymore – he was moved last night’ and she pointed to the nursery.
He had made it, finally he was at the last hurdle, gone were the machines and wires, gone was his feeding tube, all it was was a simple little machine monitoring his oxygen levels, he had never looked so normal, so free of stuff! Every moment I spent my days holding him right, clutching onto my baby tight, now no longer in fear and savoring every hold incase it was the last, but holding on tight in celebration that we would soon be home, we would soon be a family, we would soon be normal.
We celebrated his first bath, after much deliberation we decided to combi-feed so we celebrated his first successful bottle feed, we were ticking things off one by one. It was almost our time. Then the day came when we were asked if we were ready for a rooming in session? I didn’t need to go home, I could stay with him in a room and we could be together for a whole night! This was it, this was us making those final preparations for finally coming home, it was time to ditch the final monitor. No more machines, no more alarms, it was just me and my boy, and I was scared. I had become so used to the machines I subconsciously relied upon them, my nonchalant dismissal when it beeped now and again were false confidence – this was a leap of faith. That first night together I literally stayed awake ALL night listening to him breathe, was it too fast, too slow, was he too hot, too cold. I peered over the cot watching him anxiously as he took every breath. Was this what it was like being a ‘normal’ parent? After surviving our first night and all going well, we just had one more to go. This time I let my instinct take over and instead of peering over his cot, I held him close, felt each breathe, felt the calm wash over me, this was how I was going to feel normal.
The next day we had the all clear it was time to go, finally we had made it to the end, after checking everything off the list, handed a bag load of meds, we said our final good byes and walked out the doors carrying our boy to the car.
We had dreamt of the moment where ‘one day we will be normal parents’ nearly six weeks after our son was born that day came. We had endured our time in NICU now it was time for the rest of the world to meet our son and begin life as ‘normal’. It wasn’t ‘normal’, it was never going to be normal, just because you have left NICU doesn’t mean it has left you completely, we still had milestones to reach, tests to take and medication to wean off from. Despite those first few weeks which felt torturous as if we were stuck in limbo were nothing compared to living life with a prem baby, it didn’t all disappear as soon as we walked out those doors, instead we had a whole other set of challenges to face, once again we muttered ‘one day we will be normal parents’.
Little did we know, 19months later we would back in NICU once again with our youngest son and starting yet another journey.
‘One day we will be ‘normal’parents’
In a bid to help other parents going through this heart wrenching journey, over at Pudding & Chops we have created something special and partnered with Bliss to help give every baby born premature or sick in the UK the best chance of survival and quality of life.