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One Step Forward, Two Steps Back

A story of love & survival through NICU


Natasha Sinclair


95Copyright


Copyright © 2016 by Natasha Sinclair


All rights reserved. This book or any portion thereof including all images, may not be reproduced or used in any manner whatsoever without the express written permission of the author and publisher, except for the use of brief quotations in a book review. Any unauthorised use will constitute as an infringement of copyright.


Some details may have been altered in respect of privacy.


NICUmemoir2016@gmail.com


Facebook: @NICUmemoir2016


First Edition


This is in no way a medical reference. The thoughts, feelings and interpretations of the information held here, are those based solely on the personal experiences and opinions of the author and are in no way professional.

All written and photographic content are by the author.


2018.


Other formats available.


Dedication


Dedicated to my precious daughters and the staff at Wishaw General Neonatal Unit.

For my Warrior Princesses of Prematurity, who showed me the true meaning of life and who each continue to do so every day, my inspiration, my everything. And to the amazingly skilled and dedicated team at Wishaw General Neonatal Unit who fought tirelessly alongside each of them. I have said it before and will repeat such sentiment many times until I draw my last breath, not only did they each contribute to saving and nurturing the lives of my daughters but in saving them they also saved me.

Prematurity survivors are not unexplained miracles; they are the amazing result of so much intense hard work, skill, determination, and a bit of luck sometimes too, since there are no guarantees. Then there is the love and passion of each individual who fight alongside them. Miracles don't happen here, life does and it's magnificent, perspective shifting and inspiring. To each of you, for all that you have done and do every single day, from helping those tiny babies who have the ability to live through their fight or showing tenderness and compassion for those too fragile to go on, and supporting their parents on their terrifying most personal of journeys.

Forever grateful and with much love, you have a special place in my heart.


Contents



Prologue


For those of us lucky enough to experience pregnancy or parenthood in whatever form it comes into our lives. Its lessons are very much lessons in the bigger colourful tapestry of life. It's unpredictable, it's primal, raw and beautiful. It's inspiring and soul testing, it's life and death.

My third pregnancy was one bathed in desperation and grief. Desperation to realise Motherhood, which at times had felt like a fast fading dream, and grief from heart breaking unexplained miscarriages, I was still yet to hold a living child of my own in my arms.

After just 25 weeks and 2 days my pregnancy came to an end. A spontaneous delivery to my tiny Micro Preemie Warrior Princess, who weighed a mere 720 grams at birth. She went on to spend the first 15 weeks of her life in the Neonatal Intensive Care Unit (NICU) then Special Care Baby Unit (SCBU) at Wishaw General Hospital, before finally making it home.

It wasn't until my daughter reached her first birthday that I realised just how tough this experience was on me, her Mother, and I wrote my way through it, with the desire to help both myself and others who either find themselves on their own families personal journey through NICU or want a glimpse into another world within ours.

If this is a world you find yourself thrown into, know this, that anything and everything you feel is valid. From numbness, fear, terror, guilt, anger, loneliness, love, detachment, bewilderment even awe and joy in those huge tiny things, it's all a necessary part of your journey and every bit of it matters in your own tapestry.

With peace, love and hope, I'm sharing a piece of our journey with you.95


Reflection


As the world around me was filling with hustle and bustle, excitement and cheer I was dipping into numb melancholy. A quiet place of silent grief, reflection and constant concern was starting to take over. I had nowhere to hide. My dreams and most raw and primal desires to realise Motherhood felt like they were taking over me to a crippling degree, physically and emotionally. I was pregnant and grateful and yet, I was still numb and grieving for the last.

At work, my colleagues were constantly chatting about music, food and exchanging outfit ideas for the upcoming winter conference and parties. Filled with cheer and glitter about the festive season fast approaching. Engaging in this chit chat was getting harder again, there was no way I could keep it up for a trip away through a conference and social event. The conference fell on the first anniversary of my last pregnancy ending, my baby's birthday. I had to book leave from work.

That whole first week in December was filled with painful memories, I could feel it coming, like a fast train full steam ahead. It was a countdown to meltdown. So much pondering of ‘This time last year…’ I couldn’t escape myself. A year already. A year since the ultrasound room was poured over with thick, suffocating silence and I knew the news before the ultrasound technician could find the words, "It’s not good news I'm afraid." Then the longest pause before uttering the blow that would shatter the thinning air into a million stabbing shards, "There's no heartbeat." Simple words that would forever echo within my broken heart. Hours and days were spent between sad private waiting rooms, home, more scans and next steps to induce labour since my body had missed my miscarriage. It had been a year all of this, since I was induced so my second precious silent baby would be born into the world and swiftly tucked to rest in the earth the very next morning, by her Father and me.

Now, here I was in the real world smiling, trying to pay attention and concealing the panic of what could go wrong this time. My womb holding onto my third baby, another precious girl nestled inside my haunted uterus. To the external world I wasn't yet a Mother, but I held the hands of my ghost children every day while clinging to hope that one day, soon, I'd hold a warm blossoming hand of life in mine.

Having reached my limit of pretending all was good and fine I took leave from work. Leave for a week, where I didn't have to paint on a smile if I didn't feel it. A week where I could cry if I needed to, without having to swallow it back or hide in a bright tight toilet cubical sobbing in silence. I could relax into the grief if I needed to, while stroking my small bump of new life.95


The beginning of the end


The end of my third pregnancy began on a quiet day at home on Sunday 30th November. I recall going to the loo. Every trip to the loo was one dipped in fear, incase I saw red.

On this occasion I wiped and was confronted with what I can best describe as a lump of jelly, tinged with old blood. By all accounts I felt otherwise normal. In a bid not to panic, I tried to file my concern away until my Midwife appointment they next morning.

The bright morning of Monday 1st December, held the chilling accents of the winter ahead. Branches of tall trees lining the street swayed gently casting shadows between streaks of a blinding winter sun. My appointment went well and my Midwife seemed to brush off my tale of blood tinged mucus from the previous day. Reassured, I went on my way.

It was the small hours into Tuesday 2nd of December and I woke with a start. It was 03:24, the room was almost completely pitch black with only the smallest slither of moonlight tickling the very edge of the closed blind. I felt uncomfortable in my own skin, like it was too tight and the bed too empty. Paul, my other half worked nights and I was used to being alone but something on this night was just off. I woke this time with my heart thumping in the dark; I could hear it in my ears with a twinge in my abdomen. Did she kick? I thought, but couldn't be sure due to my anterior placenta, so my mind made all sorts of theory's out of the new sensations, as few as they were. I tried to focus on my breathing, to calm my racing heart. There was another twinge in my belly as I stroked my skin with the other tiny heartbeat underneath, "There, there baby girl." I whispered. Feeling something is surely a good thing, I thought as I attempted to reassure myself. Again I tried to force myself to sleep.

After a little doze and lots more uncomfortable tossing and turning, I gave up and ventured downstairs to make a hot pot of tea, and try get some reassurance from my latest go to pregnancy book. I was 25 weeks & 2 days pregnant based on baby girls growth, which was a week ahead of my original estimated due date. I refreshed myself on symptoms and advice on Braxton hicks and took some of the advice on board since these twinges hadn't ceased. I had never been this far into pregnancy before and was desperately trying to reassure myself that this was normal.

I waited on Paul getting home from work, and a little while after to see if my symptoms would take their leave since I was starting to feel like I was imagining them - they didn't. In fact, they very gradually began to increase in frequency and were definitely 'regular.' Hoping to have my mind put at ease, I called my Midwifes office, who encouraged me to call triage at the hospital, who in turn, encouraged me to attend the unit for an exam.

On our way to the hospital, we both thought the same thing, that my pregnancy anxiety born of loss was having a temporary physical manifestation. Today of all days, with that said, the twinges were most certainly frequent and had not subsided at all. Even after a few changes in activity and having had something to eat, according to what I knew of Braxton hicks (the lie I was still telling myself,) theses should have subsided or at least not be as regular as what I was feeling.

At the hospital, I answered some routine questions while my belly was strapped with a monitor. There was a lot of waiting around and it was clear from both the Nurse and Doctor that I saw that, they weren't concerned and in fact they appeared to behave in a way that led me to think that they just thought that I was a crazy, overly sensitive pregnant woman. For the hours we were there I was frequently asked about my 'pain level' which I never knew how to answer, so my response was always the same, "I'm uncomfortable." Now, for me I was admitting there was significant pain, but I suppose I do have a history of downplaying my 'discomfort,' never wanting to use more passionate words, incase my discomfort gets worse and I have no way to describe it. It's also because I don't want to appear like I'm over reacting so I under react.

Late into the afternoon I finally got an internal exam, where the Doctor confirmed that my cervix was closed and baby's head was low. She noted that from the monitor I was having some 'mild tightenings' but nothing she was concerned about. She offered that I stay in overnight for monitoring, however, given her lack of concern and getting the heavy vibe that these people thought I was a little nuts we decided to go home. Much to the delight of Paul, who was desperate to get to his bed.


95Waves rising


When we got home, the tightening continued as I decided to climb under the duvet next to Paul to try sleep it off. Lying there in the darkened room listening to Pauls breathing change as he sunk deeper into slumber, my mind summersaulted through day dreams in the dark. No matter how hard I tried I couldn't sleep, the tightening only grew more intense and closer together.

I would picture the globe in my belly. Waves were building higher and higher threatening to swallow all the land. Over and over the tide grew closer and with more vigour than before. I was scrunched into the foetal position, desperately holding the world in my arms trying to will the waves to calm. Wishing this tsunami away wasn't working. I was struggling to keep my breathing even, struggling to keep my head above the waves. Fighting back the primal need to vocalise my increasing discomfort I tried to uncurl and gently hoist myself from beneath the duvet. Maybe a bath will help, I thought with desperation.

I made my way downstairs noting the spread of tension from my entire abdomen to my thighs with each wave. In the bathroom, I turned on the tap and the water poured into the tub, gently filling the room with steam. On the loo while watching the swirling water, I pleaded with my body. I pleaded with it to stop, as I was struck by a clamminess and uncontrollable shivers. With my teeth chattering like a wind up toy and skin swamped in goosebumps, I fought to steady myself to grab hold of the panic that was pouring over me like ice water. I couldn't get a hold of it, my last shred of steadiness ran through my fingers.

Holding on to steady my leg with one hand, I reluctantly reached between my thighs with the brilliant white soft tissue in the other, eyes squeezed tight trying to escape the nightmarish red vision. I had to look. There it was smeared across the brilliant white background, pure unavoidable angry crimson blood. With forced quivering breaths I desperately tried to control the panic again. Turning off the water, I began to stand. I wasn't sure if my jelly legs would hold me upright but I was surprisingly steady.

I grabbed an overnight bag and threw in some random bits and bobs for an overnight stay at hospital. Pulling on some clothes I muttered to myself, checking my voice was working before calling triage, who of course recommended I get to the hospital.

Steadily I climbed the stairs and peered round into the darkened bedroom that was thick with sleep and said firmly, “Paul…I have to go to the hospital..."

Downstairs again, I readied myself gripping onto my logical mind. Paul came down moments later, heavy with too little sleep. Concerned about him driving I said I'd call for a taxi but as the gravity of the situation began to penetrate his foggy tired cloud he insisted he would drive.


No way back


The journey to hospital was one that felt like hours when really it took no more than forty minutes. We meandered through tight dark country roads and endless roundabouts, in the blue black of this crisp December night. Pauls voice speaking to me, trying to create distraction, about what, I really don't remember. I was under water. All I could really focus on was the increasing waves of the imminent storm. I watched the clock between waves as they came almost on top of one another, barely a steady breath before the next one began. I was reluctantly riding the waves, a new one every two minutes as we arrived at the hospital.

The landscape of the hospital was like a modern day asylum, it was built with the idea to reassure and appear friendly. With its white cladding, the building stretched itself across the green surrounding area, very different the old school styles, which were built towering towards the skies. Nevertheless, with its spread, a white ghost of a building stretched across the darkness, it was still as foreboding as those that towered above.

Buzzing up to triage for the second visit of the day and making our way through long empty corridors, the cramping running round my stomach to my back and up and down my thighs made it a challenge to keep walking upright. My body wanted to crumple to the floor.

We checked in at the desk and went back up the corridor we came to a small magnolia waiting room lined with blue chairs, a table in the centre was scattered with leaflets. Posters around the room with beaming mums and gummy grinning babies. The news channel was on the tv in the corner and another pregnant lady sat in another, casually tapping away on her phone. I curled around my stomach, straining to sit down on to the hard seat, as another huge wave took hold, there was no space between them now. The air felt thin and I was losing control. To say I was 'uncomfortable' now when I couldn't conceal it was certainly a understatement. I had barely sat down when the Midwife from the check in desk came to take us to a room, she apologised to the other lady waiting and guided us back down the corridor (me straining and hunched over the entire way) by the desk and into a delivery room.

We entered another magnolia haze, this time there was a loo on the immediate right, a cushioned blue chair in the far left corner next to a window overlooking a small courtyard. A bed to the left and an incubator against the wall opposite the bed. I had never seen an incubator in real life before but I knew what it was. Almost as though she caught the reflection in my eye, the Midwife gesturing towards the incubator said, "Don't worry about that, it isn't for you."

She instructed me to remove my underwear and lay on the bed with my long deep green skirt pulled up to my hips and the sheet over the bottom half of my body. Strapping my belly up with the same monitors as earlier that day she began taking notes and asking questions as she stood opposite me, leaning on the table at the bottom of the bed. She said that she was just waiting on the Doctor coming to examine me. A little flustered she came and went a few times furiously taking notes from the readings on the monitor, with each visit.

I felt so terribly worried that I was going to embarrass myself in front of this stranger and my partner, by making a huge mess over these crisp white sheets! Completely mortified at the thought I kept asking to go to the loo but the Midwife insisted I stay put, repeating only that, "The Doctor won't be long."

In my mind, that was an even worse scenario, as I pictured a smiling young Doctor in her pristine, starched, white coat, hair tied back with her face between my legs then whoosh! It's not just the sheets that would get messed up! Mortified again, I began to beg, "I just really need to go to the loo, I don't think I can hold on to this." As I began to plead more, trying to be heard over the increasing galloping of the monitor ringing in my ears, I felt it then. A huge swell building deep inside my vagina, something was coming and it was coming now! Suddenly I wasn't worried about getting to the loo. As calmly as I could I said to the furiously scribbling Midwife at the bottom of my bed, "something's coming, I can feel something moving down my vagina!"

With a swift look under the sheet I saw panic in her eyes. Her eyes, frozen in that brief moment, I saw terror, and my own eyes, I'm sure, mirrored that right back at her. She hit the alarm behind my head. In that same moment, I felt a warm gush and pop from between my legs, membranes ruptured and in what felt like no more than seconds, the room was filled with a rush of people. Physically I could not escape but I was screaming inside my head, Retreat! Retreat! Please just stop!


Premature birth


Strangers faces surrounded me, one thrusted an entonox tube at me and told me to breathe it in. I didn't know why at the time, I wasn't in any more physical discomfort than I had been, but afterwards I realised that I was given this as a distraction and a way to focus more on my breathing instead of the blind panic. A few deep inhales of the gas and I called out, "What the hell is going on?!"

Strangers were using my name like we were friends, "It's ok Natasha, just breathe.”

A short slender woman in a Doctors coat took the gas from my right hand, to which she began inserting a cannula. In my head I was screaming, What the hell is she doing that for?! The problem isn't up here, it's down there! I didn’t even feel the needle, I was just annoyed that these strangers seemed to be grabbing at my arms and holding my legs open while I so desperately wanted to squeeze them shut. The galloping of the monitor was deafening to me, it was almost all I could hear. Another voice rose up, "Use the gas Natasha, just breathe"

"I can't!" I exclaimed. "I don't have it and she's got my dam hand!" Suffocated by so many in the room I felt like I was being held down. I wasn't of course, but I really felt like I was.

Paul who had been holding onto my left shoulder from the car to this moment, seemed to have melted into the background. Blood drained from his face as the visions of his partner giving birth to another dead baby washed over his mind, he was being soaked into the walls of this magnolia hell. At that moment I noticed a few people at the wall in front of the bed frantically setting up equipment near the incubator, that apparently wasn't for me. One of them called over to Val, the Midwife who had been here all along, "Gestation?"

"25 weeks" she replied. My eyes darted between them trying to catch an insight, any insight. Desperately looking for someone to say it was all going to be ok. Instead I saw what can only be described as the 'oh, fuck' look in the enquiring Nurses’ face. I wasn't going to get any reassurance today. My baby was coming and there was no stopping it. At just 25 weeks pregnant, none of us were ready, she definitely wasn't.

Commanding eye contact, Val who was in the middle of it all between my legs, gently tapping my knee was instructing me to breathe deeply. I knew she was going to tell me to push but I wanted to clam everything shut. There was no way I wanted my half baked baby to come out, not yet. She was surely doomed.

Here they were, the words I did not want to hear, "I just need you to push gently, Natasha"

As much as I wanted so desperately to fight this, my body overruled everything else and obediently, instinctively pushed. I felt my body stretch and pop as my baby's head emerged. I couldn't look at any of those faces, I didn't want to see any of their expressions, I didn't want to see in their eyes what they were seeing. Val’s hands were there guiding my born too soon baby, "Just breathe Natasha.” Her eyes commanded me again. Those eyes were awash with a well practiced calm now.

At some point during all of the commotion, Paul managed to grab a hold of my left hand or I got his, I'm not sure, but I was squeezing it like holding his hand was the only thing in the world keeping me from leaving my body, keeping me anchored here. That and I suppose I was trying to stop him from running away, like I sure as hell wanted to.

As my baby was being born I felt the room fall almost silent, at some point someone had switched off the crazed galloping monitor. I remember leaning into Paul and repeating, "I'm so sorry" Over and over again then someone asked,

"Do you know what you're having?"

In my head I thought, Yeah, another dead baby girl by the looks of it! I didn't say that of course, instead Paul managed to find his voice and said, “Yes, a baby girl."

Just then my body began to take over and push again, this time I looked away from the Midwife at Paul, I couldn't face the rest of the room, I didn't want to see the mass sympathy as her tiny body left mine. As I tried to hold onto his eyes I thought I heard the tiniest of cries just beneath the chaos of this room or was it wishful thinking?

"Aww, did you hear her?" a voice sang. "Natasha, that was your baby girl!"

I couldn’t believe it. She wasn’t born silent, she had a voice, breath in her tiny lungs. It felt too amazing to be true. The world felt like it was quivering. Reality felt somewhat out of reach, I was stuck somewhere in between my vision, unable to hold onto the full picture. I was only able to catch bits of conversations, as Val explained that they were delaying clamping the cord so baby could benefit from the blood.

I know that my baby was placed into a plastic bag between my legs, to keep her warm. The crinkling I heard at the time was explained to me later by my extremely grey and traumatised partner who thought, from hearing the words, "bag her,” coupled with the crinkling signified his nightmare coming to fruition once more. He thought it was over and that she was being taken away to a cold morgue. That's it. They bag the dead, that's what they're doing with our daughter. He thought.

The delay felt like only moments as the cord was severed and our now quiet daughter was swiftly taken away to the back of the room. There was a wall of people around her all working purposely and furiously.

As Paul was taken over to the back of the room to meet our daughter by, who now appeared to be the Consultant in charge, Ashok. Val commanded my focus again as she helped me to deliver the placenta.

For Paul, he recalls only words from those moments at the back of the room, “congratulations,” “so tiny,” “intubate,” “critical.” He couldn't catch it all, his mind had sunk away into a dark corner and he couldn't make sense of anything. Only that our daughters breathing was being managed by a tube placed into her under developed lungs and the Doctors tapping thumb. Ashok was single handedly, in these moments, keeping our tiny daughter alive.

Only moments after I had delivered the placenta, I heard someone say, "We'll let mum get a quick look at baby before taking her over." “She's a good weight, 720grams.” The Nurse approaching said cheerfully. I had never heard of a “good weight” of a baby being given in grams before, it sounded ridiculous. It was less than the bag of sugar I picked up at the shops only the day before. My baby weighed less than a bag of sugar, how can that be a “good weight?” I pondered.

The Nurse approached, wheeling over to my bedside, the plastic box encasing what was supposed to be my baby girl, the box was draped in wires and beeping monitors. The same wall of medical personnel that were at the back of the room followed. I couldn't really see her, she was almost completely covered except for her fused closed eyes and the bridge of her nose.

When my eyes finally found hers, I was overcome with shock and guilt and I thought, What have I done to our baby? My heart broke.

That visible portion of her tiny face was massively swollen and bruised, my body did that to her and I felt sick. Leaning over the plastic box, a Nurse with a piece of paper and pen poised asked, "Does she have a name?"

We had picked a name, but at the moment I didn't know if she would live or die and I was too scared to say her name. Just then Paul, as if sensing my chaotic traumatised mind said, "Oswynn. Her name is Oswynn." That was it, she was whisked away and the room emptied as quickly as it had erupted not too long before.


The wait after


Just the three of us now, Val explained that Oswynn would be taken to the Neonatal Intensive Care Unit (NICU) and once they had stabilised her, one of the Doctors would call when we could go round to see our daughter.

I finally made it to the loo that I was begging to get to earlier, while one of the Nurses stripped the soaking, bloody sheets and remade the bed. I sat on that cold porcelain seat with thick glops of blood oozing away from my failed body. In those moments I hated myself. I hated my body that felt so inadequate. I hated that it kept failing my precious babies. Tears ran down my cheeks and splashed off my pale shivering knees. Silently I cleaned myself up and changed into the pyjamas from my thrown together overnight bag. My mind played the image of my daughter over and over in a torturous loop. My mind was trying to lock it up as not only my first physical memory of her alive in the world, but potentially the last.

I re-entered the room just as one of the Nurses brought us tea and toast. Paul and I were left alone. This time was mostly spent in stunned silence, we probably repeated the same aspects of our crazy day over and over. In shock, we waited. I expected to be told any moment that she hadn't made it, for how could she? 15 weeks early? How could she survive? In my mind it was impossible, we were never going to hold a living child of our own. After what could have been minutes or hours, the call came and Val entered the room breaking the desperate silence, "Are you ready to see your baby?"

Swiftly, I swung my legs around and over the edge of the bed, sliding my cold feet into my silver sparkly slippers as I stood, at the same time Paul rose from the blue chair next to the bed. "Oh! No! Hold on, sit back down, I'll get you a wheelchair." Exclaimed Val.

"I'm fine, there's nothing wrong with my legs, I can walk." I insisted. At the time, it seemed absurd to me that anyone should be waiting on me at all, let alone cart me around in a wheelchair? My baby was too tiny, I wasn't like all the other Mothers in the ward next door, birthing babies four or six times bigger than I had, my body barely held her inside before she was so prematurely pushed out. I didn't need a wheelchair I would walk to my daughter.

These were the moments when autopilot kicked in, from swinging my feet off that hospital bed and what felt like the longest walk to see my daughter. The stern, calm mask stretched itself over my face, were it would help me through the next 15 weeks of the NNU.

Of course at this time, we didn’t yet know how long our daughter would be here in hospital. For all we knew it could all be over in this first day, or it would evolve to many more days. This one crazy day, lucky for us, turned into 106 hard days or 2,544 vital lifesaving hours. Some harder than others but never easy. Some would melt quickly away into our history, gone in what felt like a blink, a long hazy sleep deprived blink. There were many others which would feel like they may never come to an end, but, each one of them taught us something new. Something about ourselves, about life, about the meaningless clutter that we sometimes fill it with and about the true value of the little things that really matter, the little moments that make it worth fighting for.


Birth plans


It feels like I've spent my life dreaming up plans. No matter how hard I've tried, how meticulous and definite the plan, Mother Nature always had other ideas.

Becoming a Mother was no different. I had dreamt up my idea of the perfect birth which to Paul was the polar opposite, in many ways, to what made him feel secure in an unpredictable situation. He would opt for hospital with lots of medical staff to hand and drugs! Lots of them!

I, on the other hand, dreamed of a private birth at term with minimal intervention at home. There would be soft music or oceanic sounds. The room would be warm and softly lit with natural candle flame. There would be water and I would give myself over to the experience as naturally as I could. I would focus on the flicker of the flame in the air, the swish of water, the sway of grass in the garden to help me breathe and release. At home with Paul, my furry clan and my best friend. Baby would emerge gently into water, I would lift her to my breast and delay detaching her from her 9 month life source until her placenta was also released from my body. No hospital, no drugs, no harsh lighting, no strangers, no interference, just natural.

After two losses and now this, my dream of how birth should be was just that, a dream, slipping away farther and farther under my now stark naked reality. This dream was one that was now very unlikely to enter my reality. This birth was the opposite of my dream, it was much closer to a nightmare and I had no choice but to swallow it all up and accept this new scary reality.


Introduction to NICU


Somewhere along this stark white corridor, we arrived outside a set of double light brown veneer doors on the right. A camera and grey intercom buzzer was set in the wall to the right, next to a notice board adorned with thank you cards.

This was not unlike any of the other ward entrances, except on the left side of the doors, which were set back in their own little white alcove, was a brightly coloured cheerful painting.

A cuddly little brown bear playing cheerfully with coloured building blocks against a sunny yellow background surrounded with brightly coloured balloons. Innocent and carefree, I wondered what that was like, for those days were long gone, if ever they had existed.

I didn't know what we were walking into, this cheerful bear was not going to trick me. I doubted there was anything so cheerful and light hearted behind these doors. Val buzzed and said, “Hi, I'm here with baby Oswynn’s Mum and Dad.” The magnets holding the doors firmly closed released, as though letting out a sigh from a tightly held breath and Val pulled the door open.

Through a wall of heat, we entered a small space, painted again, in magnolia. On the right, an even smaller waiting room lined with blue seats with a little children's play area in the corner. To the left, a wall of blue lockers next to a loo. Straight ahead was another double set of doors, a glass window in each gave sight to a very different corridor with several rooms coming off from either side, and the glimpse of another reception desk at the bottom. On the wall to the left of these doors was a hand sanitising unit with picture instructions above with rules to be followed before entering. Since we didn't have outdoor garments with us to deposit in the lockers we followed the other instructions;


All rings, watches, other jewellery to be removed from hands and wrists.

Sleeves to be rolled up past elbows.

Freshly washed hands, wrists and forearms to then be rubbed with sanitising gel.


On the door itself was a detailed poster highlighting the dangers and ease in which infections could be spread to the vulnerable babies beyond, this was a cold free zone, the risk was not welcome.

We were as ready as we were ever going to be. Just then I had to remind myself to breathe once more before stepping through the doors. One big deep breath.

We made our way down the corridor, it was a straight line but we were most definitely lost in a foreign world. Disney characters frolicked cheerfully in splashes of colour adorning the corridor walls. We stopped just before the reception desk in front of a cabinet with a blue clipboard and pen set on top. This was the sign in sheet, the Nurse at reception explained that every time we visited the Neonatal Unit (NNU) we had to sign in on arrival and sign out on departure.

Val left us with the Neonatal Nurse, saying she would come back for us later. The new Nurse then took us round the corner to the right and stopped just outside the room, where our tiny baby was being kept alive.

This room was closest to the reception desk on the left side after we rounded the corner. This room appeared very different from the others even at this early stage. It had double light blue doors that were closed, the windows set in the doors had curtains drawn closed also. We had no real hint as to what we were stepping into.

Before entering the room, the Nurse spoke to us about etiquette in the unit. Explaining that the Intensive Care room was an open space, each baby had his or her own little area. Just as in an adult ward, the privacy of the vulnerable patients and their families must be respected at all times so, of course, there was no looking in on other babies permitted. Each baby had their own dedicated Neonatal Nurse or Neonatal Midwife assigned to them who would look after them as instructed by the their primary Consultant or the Consultant on duty in the unit at the time. This meant that the tiniest changes could be monitored and action taken as needed. It was 1:1 care in the NICU with support of a highly skilled medical team. She went on to explain that she would take us to the sink first and talked through the hand washing technique that must always be followed upon arrival before going to see our baby. She smiled and pushed open the door.

Inside the room was bathed in a blue hew, the air was warmer still. My heart started beating harder again as this new wall of heat and blue had the addition of a wide range of different beeps and buzzes. Drawing what focus I could muster, I took in my new surroundings, my daughters home. I noticed another desk to the left as we entered the room, I tried to keep my eyes low. Partially this was pure fear, I was so scared to look and was also scared incase my eyes invaded someone else's privacy. At the sink we scrubbed deeply up to our elbows, dried and gelled. We were then introduced to another Nurse who guided us to our baby girls incubator, which incidentally was the very first bay next to the sink.

I was instantly thrown by the barrage of machines behind and to the side of her isolate, it looked like chaos. Each of them fed wires and tubes into the enclosed perspex box, making their own unique whooshes, buzzes and beeps. Set above the machines was a monitor with different coloured waves running across the screen each with numbers flashing at the end. The Neonatal Nurse who was assigned to Oswynn this first night, set a tall backed, low cushioned orange seat down in front of our daughters incubator and insisted I sit. She then brought another seat over for Paul. The Consultant who had spoken to Paul earlier, after Oswynn’s birth, Ashok, was at the other side of the isolate and swiftly came round and crouched down to speak with us. I can't recall the exact details of the conversation. It was hard enough just trying to take in such a foreign environment, and to try to hear past the alarms, since so many of them seemed to be concentrated around our baby girl. I do remember desperately trying to just focus on the kind Doctors face. He responded to our clear bewilderment and spoke clearly checking that we understood. He referenced back to his conversation with Paul earlier, as it was clear Paul wasn't at that time, able to absorb any of the information. It was no less a struggle still, just a few hours later. Although both still in shock, the message was unavoidably raw and clear. Our tiny extremely premature daughter was on life support in critical condition and we had to take things at the most, “hour by hour.” Absolutely nothing was certain, her chances of survival at this point were 50:50 at best. If she was to survive there would be a whole host of possible health complications to contend with. From mild learning difficulties to severe physical and or mental disabilities. We were also told that if she survived, the length of her hospital stay would of course depend on her unique set of obstacles as every baby was different. Of those who make it home, it would be extremely rare for them to be discharged before the original due date, so our daughters hospital stay would be at least 4 months. The journey that lay ahead was one laden thick with black smoke, no one could say when or how it would end.

The Consultant encouraged us to ask questions as and when we had them, and reassured us that our daughters Nurse and any of the other Doctors would be happy to answer any that they could. He reassured us that he would speak to us later and left. Up to this point I hadn't looked inside the box that held our daughter. She made her dramatic entrance into the world at 22:44, it was now around 03:00 into the next morning as we sat quietly terrified by her isolate. My head numbly raced, she should be inside my womb, not in a plastic box attached to a machine keeping her breathing, not being infused with bays full of drugs. She should be safe in her amniotic sack growing bigger and stronger, inside my belly, not here, not like this. I was supposed to be the one to keep her safe and I had failed. How could I possibly protect her now? How could I be her Mother?

I rose from the chair and with half reluctance, half desperation to see her, I peered into the incubator. The inner walls were covered with tiny droplets of condensation as our baby was kept inside a closely controlled, warm humid environment. Medicines attempt at recreating the womb. Her Nurse gently spoke through the equipment being used so we could understand what we were seeing a little better.

Our tiny baby girl lay there, upon a blue and white cotton sheet, printed with brown teddy bears, fluffy looking clouds and dreamy yellow stars. She was completely exposed and looked raw and sore. My breath caught in my throat again, I almost choked. Lying flat on her back, her head was turned on her right cheek. Her head was covered in gauze, the bottom part of her face covered in another layer of gauze covered over the top with tape, was holding her ET tube in place. Like before when I first saw her in the delivery room, only her swollen fussed shut eyes and bridge of her nose could be seen of her face. This menacing looking tube protruding from her mouth, went down into her trachea, where the ventilator blew in air and pressure to support her lungs, this machine was essentially breathing for our Daughter. Her arms were both lying back, elbows bent hands pointing up as though she had surrendered to her mechanical surroundings. On her right upper arm a tiny white blood pressure cuff was loosely wrapped round there, this was transmitting regular readings to the monitor overhead. Around her right wrist another cuff, this one was grey and was continuously monitoring her blood oxygen saturation (Sats) levels, also visible on the same monitor. Her skin was covered in fine lanugo, it was painfully transparent, I could see her heart flicker like a trapped butterfly in her chest just beneath her painfully visible ribcage. My eyes slowly traced down her belly where her umbilical stump quivered as two catheters (Umbilical lines) protruded. These were there to administer medication directly into her bloodstream as well as withdraw blood for checking her blood gasses. Her legs were splayed open bent at the knees, almost mirroring her arms. The side of her incubator was littered with tubing running between her fragile body, and machines that were lined up outside the box.

Oswynn’s Nurse was very gentle with us. Knowing we were unlikely to be taking everything in these hours, she spoke to us about the rules of the NICU, sick guidelines, visiting policy, facilities etc. We had entered a strict sterile bubble We stayed for a couple of hours on that first visit, trying to find our feet and get accustomed to the new surroundings that would be our daughters home. The Nurse encouraged us to speak to our daughter, and she showed us the protocol for opening the portals on the incubator (two little round windows at either side,) so we could touch her to help bring her and us comfort. Gelling before and after was essential to help reduce the risk of introducing or spreading infection, which was a massive risk factor to extremely preterm babies. I was terrified to touch her, she looked so raw, haven't I done enough damage? I thought. I worried that my touch would burn her, like acid. She wasn't ready to be outside in this world yet, no one should be able to touch her. As if seeing my thoughts run across my face the Nurse began to reassure me, “You won't hurt her.” She said softly. “You're her Mummy, she needs you.”

I wasn't going to let my fears win, I had to learn to swim in these dangerous foreign waters, the sooner the better. Gelling my hands, readying myself to open the door, it didn't feel like enough. I stepped over to the sink and rewashed and gelled my hands again, up to my elbows as before. With the tip of my thumb, I gently slid the grey button to the right, unclipping the portal door open. I tentatively reached through into the humid plastic box, my daughters medical womb. I was shaking as I reached for her tiny hand. I caressed her palm with the tip of my forefinger, as gentle as I could, a feather touch. I raised my hand up and gently cupped the crown of her head in my palm, so tiny, so fragile, I let my hand rest there for a moment still trying to get a hold of this journey we were beginning. “I’m so sorry baby girl,” I whispered, as tears tumbled down my cheeks. I moved my hand back and lay my index finger back in her tiny Palm, her thread like fingers clasped my own finger. I couldn't believe how strong her grip felt. So tiny and so incredibly strong. I let the hope in that tiny first grip wash over me, she could make it.


Back to the ward


Back at triage, one of the Midwives had helped us move to another room, located between the Labour ward and Postnatal ward. This room was next to another reception desk and appeared furthest away from the rooms filled with smiles, new baby coos, cries and happy families. We could still hear them in the near distance, we could hear joy, while my belly and our arms were empty and the future so terribly and painfully uncertain. We came to regroup, as it was that time in the morning were the nightshift team were handing over to the dayshift, which would be followed by Doctors rounds in the NICU.

We spoke a little about visitors and how to break the news to people. That’s what it felt like, news to be ‘broken,’ not a happy announcement to be shared. As Oswynn’s parents we were welcome to come and go from NICU at any time, but we decided immediately that we would not be inviting visitors to see our painfully fragile baby in intensive care. The policy permitted, healthy germ free visitors for an hour twice in the day. One visitor was to be accompanied by one parent during these times. For us, we felt that visitors only brought unnecessary risks and stress and would steal precious time from one of us. Time that could be cut short for all we knew. So we agreed it would just be us. We needed a little time to absorb the situation ourselves, so we also decided to wait a little before sharing news of our daughters birth.

Exhausted having not slept and needing some things from home, Paul went home for the morning. A kiss goodbye and I was alone, I didn't know then just how incredibly lonely I would soon become. I sat there in the cool hospital room, leaning back onto the tilted bed. She felt so far away. I ran my hands over my painfully empty belly, longing to hold her, to have been able to have kept her safe. She was in someone else's hands now and there was nothing I could do.

Someone brought in a tray of breakfast, I couldn't eat, I tried to sleep but I couldn't do that either. Another knock at the door and a very cheerful lady came rolling in with a computer on a little table, this was the ward ‘Bounty Lady,’ someone who signs you up for new parent and baby discounts via email and issues you with a pack of free baby product samples. She was polite enough but, here, she felt very much misplaced to me. Another reminder that I wasn’t like all the other Mothers that I could hear nearby with their healthy babies. I smiled and nodded politely, willing this pointless interaction to be over until I was finally alone again.

I couldn't take my eyes off the clock now. Time just seemed to melt the previous night and this morning spending those hours by our tiny daughters side, but now it oozed by so very slowly. The door opened for the third time since Paul left, this time it was one of the Midwives who did a postnatal check. She was followed swiftly by a bright, bubbly young woman who had come from the NICU.


Squeeze and pinch for gold


Leigh-Ann was the units Breastfeeding Support Worker, a passionate young Mother herself. Her vibrancy and confidence in her field shone brightly and sincerely. She had the kind of personality that instantly brought light to an otherwise muted room. Breastfeeding, was always part of the plan but now, how could I possibly breastfeed? Was it even possible for me to produce milk at all haven given birth so early?

Leigh-Ann sat by the side of the bed with me, she wished me congratulations on the birth of my baby girl. We chatted a little, then she asked about my plans for feeding. With enthusiasm Leigh-Ann explained that I would absolutely be able to produce milk for my baby, much to my surprise. She talked over the benefits of breast milk, particularly to poorly premature babies like Oswynn, and gave me some reading material. Suddenly for the first time, I felt a sense of purpose in my daughters care, Leigh-Anne gave me hope as a Mother. I could do this for my daughter, something that no one else could do! None of the Nurses or Doctors could do this for her but I could, I could feed her.

She spoke to me about the facilities in the ward and at the NNU to help support breastfeeding and expressing. Leigh-Ann patiently sat by my side and demonstrated the technique for stimulating milk flow and hand expressing. Armed with syringes so I could immediately salvage those tiny initial drops of precious colostrum, I now had a focus for when I wasn't by my baby girls side.

While I continued to practice hand expressing, which was much trickier than I imagined, if I ever did imagine it before now that is, Leigh-Anne left, later returning with a little sterilising kit for me to use while in the ward. She also brought with her labels, syringes, and an electric breast pump and kit for me to try later and talked through the finer evils of sterilising equipment and milk storage.


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