We had found ourselves at the Neonatal Intensive Care Unit (NICU) at the University Hospital Wales (UHW). We were there at the “back door entrance”, an entrance used to access the NICU by mothers who were also patients at the hospital, for reasons relating to the birth of their babies. I was sat in a wheelchair, with my husband Dave stood behind me. It was around midday on the 2nd February 2017 and around 4 hours prior to this, I had given birth to my daughter. She was born at 23 weeks’gestation; 17 weeks early; and weighed 580 grams (1lb 4oz). I had been admitted at the hospital three–days before her birth.
Throughout my pregnancy, up until a couple of minutes prior to her birth, my baby had been well. She had no known health issues but my body was pushing her out. Inside the womb she was thriving, but outside she would be dealt a completely different hand. She wasn’t yet considered viable for life outside the womb, but out she was coming. This was the thing I found most difficult to accept; to understand. There had been no need for doctors to remove her from my body in an emergency situation, so why couldn’t I just keep my healthy baby in, where she was well? I hated myself.
My labour was spontaneous and a complete shock. Once born and resuscitated, our baby was immediately taken away. The whole thing was horrendous; the stuff of nightmares; the stuff that can change you for the worse; forever.
I was still a little foggy from the gas and air and from the fact that I was pregnant, carrying a healthy little wriggler only days before, but now she was out into the world. My pregnant stomach was rapidly disappearing before me and I was quickly forgetting what it felt like to be pregnant. I barely knew anyway, so it was easy to forget. Her hands and feet and legs and elbows were now out in the open air; out in the atmosphere; out in the day time. The lethal day time.
She was born before viability and was not expected to survive (by anyone it seemed) and having caught a glimpse of her before she was taken away, it was easy to see why. You didn’t need to be a medical professional to see it. She was clearly still a foetus.
I scoured the NICU from left to right, with wide eyes and shallow breath. I appeared calm on the outside but was frantic on the inside. It was as if I had arrived into this fantasy world where the atmosphere was blue. Or maybe that was the colour of my broken heart, seeping fumes that filled the inside of my body, pouring out through my eyes, making it seem that way. My mind’s eye just sees blue. It was like walking into a space ship with all its beeps and pings and lights and all these individual beings wearing the same clothes, deep in the zone, tending to their individual tasks.
Going back to the blue thing, every baby in every incubator had a nurse assigned to them, a nursedressed in blue scrubs. Some were sitting on their chairs at the small tables placed at the bottom of the incubators, filling out charts; others hovered around the incubators, carefully and meticulously tending to the new-borns in various ways; and the rest were placed around the room discussing matters, informing doctors, sat at separate tables preparing meds and making their way to various places. There were ward sisters dressed in navy blue, there were nurse practitioners dressed in blue scrubs and doctors too. Sometimes the colour of the doctors’ bottoms differed slightly to the tops, and initially I often found myself confused, not knowing who was who. It was different with consultants as they were usually dressed in normal clothes, and when they did wear the uniform it had ‘NICU Consultant’ written on it. It was also less confusing with nurses: they were much more of a permanent fixture in the room. It was pretty obvious who the nurses were, but I often confused a nurse practitioner for a nurse or a doctor, or a doctor in scrubs for a nurse practitioner or a nurse. It was hard to keep up at first because there were so many professionals around, but I got to know who–was–who soon enough.
There was an incubator filled with a luminous blue light; perhaps there was more than one. The light was piercing and if you hadn’t already realised it, the glare of the light made you realise that the environment you had just stepped into was very clinical, very medical, very scientific and very intensive. It was all of those things and more.
It was a private ward, on lockdown for obvious reasons and I remember it being quite dimly lit. It wasn’t dark of course but the light was a little restricted. The windows were above us if I remember correctly and the glass was misted or frosted, which seemed to limit the amount of light that shone through. You couldn’t see out of the windows and they were never open. I was advised that the reason for this was to keep possible infection from outside coming in. This particular unit was a temporary one. The staff and patients had moved to this location while a new NICU was being built. The new unit was going to be quite a bit bigger.
A second earlier, the space I had travelled through was quiet. There were probably voices and footsteps etc. but in an instant, we had entered the NICU and BAM! Noise. Not loud noise but noise; sound; lots of sounds coming together to make an orchestra of noise. It was a similar situation to stepping off an air–conditioned plane and into the much hotter climate of somewhere abroad, when the hot temperature instantly covers you and surprises the system. It was just like that, but the thing that hit you was sound, not temperature. It was like a secret world; an alternate universe; one I never knew existed.
There were nine incubators in the ICU. From the doors where I was standing, five of the incubatorswere spaced across the wall to my left and four across the wall to my right. Or perhaps it was the other way around. Each baby was wired up to a monitor that monitored their every breath, their heart rates, oxygen levels etc. and the monitors rang and beeped and shouted and complained at even the slightest discrepancy, as if to say, “um hello! Someone! There’s something up with this kid!” Even when they weren’t yelling they still made a noise. It was a monotonous pinging sound that kept a steady rhythm; and kept its beat. A beat and rhythm that in the coming weeks and months would inflict upon me the most unforgiving dizzy spells and to cause me to almost lose my balance on one occasion. Ping; ping; ping; ping; ping. A beat and rhythm that I would hear while at home in the bath; in my bed; in my dreams and just about everywhere. A beat and rhythm that when combined with intense stress made me want to scream at times. But a beat and rhythm that was absolutely necessary; that confirmed whether a baby was stable or not.
There was a glass window that ran across the entire top half of the right-hand-side wall. On the other side of the wall was the High Dependency Unit (HDU) where the less sick babies were. Ordinarily, visitors to the ICU had to enter via HDU. The glass separating the two rooms allowed you to see into HDU from the ICU, and vice versa; but only if you were tall enough. It was nice and light in the HDU and the vibe in there seemed different. In the coming days, when I had to walk through the HDU to get to the ICU, I’d get to witness the reasons why the two rooms were so different. Sometimes babies were born and would be sent straight into HDU and other times babies from ICU would graduate into HDU; a step closer to home. “We’ll never make it there”, I thought. It looked like a paradise to me, compared to the hell we’d found ourselves in.
Dave, who had already visited our daughter a short while before, said, “we need to wash our hands,” and he wheeled me towards a very wide sink that was situated to our left. Watching every move he made as if I had never washed my hands before; he turned on the tap, placed his hands under the running water, lathered them up with soap from the dispenser, rubbed it in for what seemed like an eternity, rinsed the water off thoroughly, dried his hands and then covered them completely in an alcohol hand-gel. As I copied him, he said, “everyone who comes in here needs to wash their hands thoroughly because of the risk of infection.” This was the first thing I had to learn during my time there. It wouldn’t be long before my hands would become incredibly dry, sore and cut from constant cleaning.
Now with sanitised hands, I thought, “Where is she?” Without knowing where she was, without having been given any information about her location, my eyes were desperate to find her. I felt a sense of longing; wondering if I’d subconsciously know without being told. Would my maternal instincts be able to sniff her out? Where was my precious baby? I didn’t have enough time to figure it out though because within seconds, pointing to the left-hand side, Dave said, “she’s over there.” From a choice of nine incubators, her location was narrowed down to five. “Which one was she?” The second he started to wheel me towards her, I began to feel as though I was floating. In an instant, I had gone from being completely aware of my surroundings, desperate to take it all in, to feeling as if I was in a trance. I was on the move and my brain struggled to process everything. I was going through the motions without feeling completely present. The shock of what had happened that morning, combined with finding myself in this new, strange and terrifying environment, sent me into this slightly detached from reality daydream. “Is it this one?“, I casually asked myself as if I was looking for a house on a street that I was visiting for the first time. “No.” “Is it this one? No.” It was strange because every time we passed an incubator, I had already realised that that baby wasn’t mine. A mother’s intuition, perhaps.
As I moved through the unit, I did my best to try to take in my surroundings, despite my state of shock. I especially took notice of the babies. As a defence mechanism, I subconsciously told myself to take them all in. I wanted to prepare myself for what I might find when I saw my darling girl. I remember at least four other premature babies in addition to our daughter, and the sight of them made my heart stand still. They were the smallest beings I had ever seen. There were two born the day before our daughter that weighed 2lb each and there was another that weighed 1lb 8oz at birth but now, three weeks later, he would have been a little bigger. The other baby was clearly older and therefore bigger than 2lb it seemed but she was still tiny. I’m sure I wasn’t supposed to be looking at the babies and I probably wasn’t for very long at all, as it only took me a matter of seconds to get to my daughter, but I couldn’t help but look as I passed.
As I moved closer to our daughter’s incubator, I passed a baby whose gastric organ/s (I don’t know if this is the correct term) were outside of his body. I don’t know which one/s exactly; possibly his intestines or bowel or maybe something else. It/they were hung up inside the incubator, in a bag, I think, hanging by some kind of hook. Taking all this in, I suddenly snapped out of my daze. I was brought back to reality, my reality, and there was no escaping it. Again, the shock, a new and unexpected shock, saturated my heart, mind, body and soul. My heart pounded at the sight of it. I simply wasn’t prepared for this place. I keep saying this, but I wondered how I had got there. How were we in this position? How, when only 4 days before, I was enjoying Sunday lunch and a walk with my husband, living our lovely life, were we then in a room with the country’s sickest babies, one of whom was my own?
Seeing this child, I did what I always do; I remained calm but on the inside I was shocked to the core. Like a duck paddling in water, I appeared calm above the surface but underneath it my hypothetical legs moved like the clappers. I mean no offence towards the little chap, of course, but seeing what I saw is not an everyday occurrence. Yes, seeing a baby’s insides on the outside is disturbing, but what horrified me most is the thought of how sick he must have been. The thought of it was terribly upsetting. The NICU team, in the days prior to our daughter’s birth, had explained what we could expect when it came to our own child and they provided a basic explanation about what a NICU was; but there had been no discussion of what we might encounter with regards to other babies,so to see something like this just floored me. I’m not implying that we should have been provided with a list of possible reasons for NICU admissions, I’m just explaining that I hadn’t imagined the things I was going to see.
Who are the world’s most precious, most loved beings? Children. And there we were, in a room full of the country’s sickest. And more specifically, new-borns. Humans that hadn’t even had a chance to live yet. They’d had no experience of joy at all; not even for a year, a week or a day. We had been thrown into a room amongst many of them, with little prior warning, trying not to sink. Brand-new people, whose start to life had been terrible, for whatever reason. It was a lot to have to deal with.
Still startled at the sight of the baby whose insides were hanging up inside the incubator, I reached “my” incubator! At the final stop. I had suddenly found myself at the bottom of my daughter’s incubator. We were there. She was centimetres away. I was practically on top of her and at the sight of her, my efforts to prepare myself were thrown out the window. “Here she is,” Dave said. I looked at her and I couldn’t believe my eyes. I had been shocked to the core when I caught a glimpse of the 2lb babies; the 1lb 10ish baby too; they were among the smallest things I had ever seen. I couldn’t believe they were human beings. I couldn’t understand how they could ever survive at that size. But compared to her, those 2lb babies looked enormous. Looking at them, it was as if she was a pretend premature baby; an experimental doll for training purposes that some dodgy manufacturers had gotten wrong. Putting it into perspective, she was almost half the size of a 2lb baby; just 4oz away from half the weight, and when you consider that tiny babies like these are only made up of a number of ounces in total, you might be able to visualise how different a 1lb 4oz baby would appear to a 1lb 10oz baby. Compared to the other babies I’d seen so far, her head was smaller, her legs were skinnier, her arms too and her torso was narrower. To me, the difference in size was blindingly obvious and it saddened me to the core. It defeated me. I felt numb and again I went into this floaty, spinning feeling, slightly detached from my reality. It was as if life was toying with her; reality was goading her, biology was teasing her and I wanted to die.
Seeing how unbelievably tiny she was truly awful, and dealing with that alone would have been enough; but what alarmed me most was her gestation. 23 weeks. 23 weeks! Gestation determines the maturity of a baby’s organs and hers were obviously far from mature. Born when I was still in my second trimester, before I had even reached 6 months of pregnancy, I felt as though the world was against her; against us; and that we were facing a battle that was too big; too fierce; a battle that simply could not be won. She was not yet considered viable for life outside her mother’s body and, as her mother, not being able to help or protect her made me feel inadequate. It made me feel ill.
The words of the NICU doctor who had continued to visit us on the ward before our daughter wasborn and had resuscitated her at birth, bellowed in my ears. He said, “every day inside the womb is vital. So many changes and progressions occur daily, to the point where your baby’s chances of survival will more than double if he or she is born at 24 weeks as opposed to 23 weeks.” So as I nodded, smiled, listened and went through the motions of the initial NICU introductions and explanations, part of me wondered what the point of it all was. That particular doctor’s words played through my head in a continuous loop, and part of me wondered why the nurses and doctors in front of me were bothering to explain anything to me at all. I mean, she wasn’t going to be around for long, so what was the point? Why were they wasting their breath providing me with information that I was too traumatised to properly take on board?
Nurses smiled at me, asked if she had a name and told me she was lovely. I was two people: one that would be her eyes, ears, and her voice when she couldn’t speak. Her protector, the guardian of her interests, her caregiver and her undying supporter. But I was also defeated and desperate to protect my vulnerable heart. The part of me that wondered why they were bothering was the part of me that was desperate to protect myself. If I told myself that she wasn’t going to be around for long and if I chose to think they were just going through the motions for the sake of it, just to simply fill in the silences, then I wouldn’t be shocked when she died. It wouldn’t be as much of a blow. I was two people, but first and foremost I was her mother, and my God, did I love her.
Sat in the wheel chair by the side of her incubator, I was afraid to move. “What if I bang something, or knock something, or somehow manage to break her from the other side of the plastic?” She was slightly higher up than me and my stretching my neck to see her didn’t give me a clear enough view. So I plucked up the courage to try to get up out of the wheel chair to stand over her, but my wobbly legs somehow jolted the wheel chair forward. If I wasn’t already a bag a nerves, I certainly was then. So I sat back down, content with just seeing her from an angle. The nurse said, “push the pedal and the incubator will lower to your level,” but I was so scared to touch anything that my flimsy effort to touch the peddle didn’t move the incubator at all. The nurse did it for me and down came the incubator.
My eyes zoned into every inch of her, especially her face, and even though I was devastated, part of me was fascinated and in awe of her. I was instantly in love. The feeling was overwhelming. Both my love for her and my fear of losing her, was overpowering, all consuming and my heart physically hurt. I love my people hard but I had never believed in love at first sight. I thought it was a load of nonsense until I met my daughter. This tiny human being, who was a complete stranger was someone I would have given my own life for in an instant, if it meant she’d survive.
She was absolutely beautiful and I was surprised. I’m her mother so I’m always going to think she’s beautiful, but separating myself from that role and thinking logically, it amazed me that someone born so early; still very much in the foetal stage, could be so pretty and already have such lovely features. Such unique little features of her own.
She was incredibly bruised all over her body and the initial sight of her was upsetting, but once I took time to look closer, I could see how lovely she actually was underneath it all. She was born footling breach and Dave and I assumed this was why the worst of the bruising was on her bottom half. Seeing the damage her birth had caused to her legs, we were relieved that she hadn’t come out head-first. Looking at her in the incubator, I wondered if she was in pain. She had the most perfectly round head, covered in the tiniest buds of black hair, which I thought was bruising at first, and she had a little turn-up nose. As heartened as I was to soak up the sight of her, taking pride at what I had co-created and fascinated as I was to see any sort of family resemblance, her being pretty saddened me even more. I couldn’t have cared less what she looked like, I just wanted her alive and well, but I was able to imagine exactly what she would look like at one and two and five years old etc. and her being lovely enabled me to imagine the personality she might have had to go with it all. I could see the human being she was meant to be and it broke my heart that I’d never get to know her and that she wouldn’t accompany me through the rest of my life. I fantasised about us being best friends; partners in crime; but it wasn’t going to happen.
Our daughter, a few hours old. Photo taken by my husband Dave during his first visit to the NICU. I was yet to meet her.
People have asked me if her skin was transparent; it wasn’t, but it was so red and black from the bruising. It was also paper thin, and she was lying in an incubator in 95 degrees of humidity, to keep her warm and to stop her skin from breaking. Her eyes were fused shut and even though the outside of her ears had formed, with all the groves and indentations, they were paper thin. To my eye her vagina didn’t look as though it had finished forming. It seemed as though it was still very much in the process of doing so; as if her genitalia had only recently decided it was going to be female and not male. That was just how it seemed to me of course and that was something that hit me hard. It was shocking to see. Proof, if I didn’t already need it that she was here far too soon. She looked far from ready to be doing this, far too fragile for any sort of fight.
She was covered in wires and tubes, and she was wearing the tiniest woollen hat I’d ever seen. It was white with a peach trim. She was covered in a plastic bag (this helps to retain body heat) and a ventilator tube ran down her throat. The ventilator was breathing for her. She was ventilated at three minutes of life and required 100% oxygen just to maintain adequate saturation levels. She started herlife in a critical condition. The tube wasn’t really all that noticeable at first because of the way it rested in her mouth; it was hidden by what I call “the face scaffolding”.
Across her face was a robust strip of plastic which was taped to each cheek. It covered here entire face because she was so tiny. The sticky pieces were clearly stuck on quite securely and I worried that if the scaffolding were to be knocked or jolted for whatever reason the sticky bits would tear her skin. Her skin was like paper, after all. The tube going down her throat was secured to the scaffolding with some sort of tape (I think). There was a line going directly into her belly button, which was upsetting to see. You couldn’t hide from it, it was completely visible. It looked very uncomfortable, as though it could be hurting her. It made me feel sorry for her but I knew it was essential. It was providing her with a lot of what she needed to survive. There was a sats probe wrapped around her right wrist and thin black, white, yellow and blue wires rested all over her body, stuck on with more sticky pieces. There were countless other tubes and wires in the incubator with her, connected to different machines and plugged into the wall. It was terrifying to see.
It was such an alien vision, not what anyone ever dreams they’ll witness in their lifetime and in all honesty, most people don’t. Nothing can prepare you for it. Not when it’s your child and especially when it all happens so quickly. My vision had been that she would be born and wrapped up in cotton wool, with a tummy full of milk and with cotton or velour next to her lovely pink skin for the longest time. Not this. Not placed in a plastic bag with tubes and wires going into her body and surrounding it, not black and blue either and not weighing 580 grams, laying in a box full of steam. This was as far away as you can get from what I had imagined and even though I smiled when I looked at her and listened to what the professionals were saying, I wasn’t really present. I was somewhere else. In the land of complete and utter shock.
The nurse looking after our daughter made herself known to me and I immediately recognised her from my delivery. Her hair was pulled back into a ponytail. It was quite long and was probably the feature that enabled me to recognise her. She had a lovely smile and a kind face. She was warm and softly spoken and I instantly liked her. It was immediately clear to me that she was experienced and her seemingly calm persona made me feel as relaxed as I could possibly be and happy that she was the one looking after our child. I remember saying as much to Dave. I didn’t recognise any of the others of course, and I didn’t doubt that everyone there was completely capable but you can’t explain it; sometimes, with no knowledge of your own, you just want what you want. Her looking after my child made me feel calm and confident and that was that. I liked her.
She greeted me with a smile and let me know what was going on. She told me what had been done and she told me that our daughter was currently in a stable condition. I nodded and smiled and then there was a little silence; because what more could be said? I often encountered silences with doctors and nurses because the situation was so bad. They couldn’t say she was fine or going to be fine and after giving us bad news, it was often difficult for them to know how to leave things. It was a terrible situation and Dave and I both knew that it was just a wait and see kind of time and that the prognosis for our child wasn’t very good at all. Picking things up again, she said, “she’s a beautiful little thing, she’s just so tiny”, and I instantly wanted to cry. What did she mean by that? What was she trying to tell me? Was she trying to tell me that because of her size, she wasn’t going to make it? Was she trying to tell me anything at all or was she just making a statement? A statement which was undoubtedly, indisputably true. With an ache in my throat, I nodded and said, “I know.” Whatever she meant, I knew that our child was particularly little and probably the size of someone that they don’t see too often because if she wasn’t, it wouldn’t have been brought up at all.
You see, I analyse everything. Throughout my life it’s been a blessing and a curse. During my time at NICU, because of my heightened emotions and the stress of being there, I examined every look on every person’s face. I examined their body language, whether they were talking to me or not. I analysed their words and sentences. If a doctor or nurse came close to my daughter, perhaps they were not even looking after her, but just came close by, and they walked away, I’d carefully watch their faces to see if they gave any kind of sign that they thought something was wrong or the situation was bad or that they thought she was going to die. I also obsessed over people’s tone of voice. On a given day, even if she had been stable all day, a staff member could say something general; anything; a passing comment; something that if said one way, would have no effect on me, but when said with a specific tone, it’d quickly send me down a slippery slope of anxiety, convincing myself that they thought she was going to die but weren’t telling me. This type of behaviour occurs, I suspect, when someone is losing their mind through fear and stress; and this went on on the inside for months, but on the outside I remained calm and (I think) kept a sensible head on my shoulders. It’s insane really because in those first few days, I didn’t know the doctors and nurses at all. Not one bit. I didn’t know the ordinary tone of their voices, their personalities, their mannerisms; so how could I analyse and ever think I could come to any sort of reasonable conclusion? How did I ever think I’d be qualified to do so? And why did I put that added pressure and upset onto myself, when life was bad enough already, over things I knew deep down that I could never know for sure? The common sense side of my brain already knew that, but my desperation to protect myself sent me a little crazy. If she did leave us, I didn’t want it to be a surprise. Not that it would been have anyway. But your mind is everywhere, plagued by contradictions; and I wanted to be sure it didn’t take me down that road of denial.
Sat on the chair at the end of her incubator was the gentleman who had become her “named consultant”. The NICU had approximately 10 consultants, if I remember correctly. All 10 or so of them wouldn’t be there every day, of course; different ones would be present on different days for various reasons but they were all always in the know as to what was going on with our daughter, even if they hadn’t been around for a few days. This particular chap was the consultant in charge of the NICU that day; so he was designated her named consultant; as was the case for any other babies admitted there that day. At least, I think that’s how it worked.
Looking up at us, he introduced himself. “Hello I’m … Firstly, let me say congratulations. I want to let you know that I will be your daughter’s consultant.” And instantly I felt as though I had been smacked in the head. A clout somewhere on par with what could have been doled out by Mohammed Ali. “Congratulations”. I just didn’t see that coming. I never expected it, never expected to hear those words in my situation. That just shows you the dark place my head was at. It really took me by surprise; to the extent that it wiped the polite smile off my face. I remember not being able to camouflage the surprise and confusion; for a second it was written all over my face, and I hoped he hadn‘t noticed. It was nothing that he did wrong. What else was he supposed to say? I blinked,frowned and then quickly brought myself back to a smile again and said, “thank you.” It was a kind thing to say; actually, I think it was the right thing to say and I appreciated the gesture and the attempt to bring some normality back into our lives; but I just couldn’t see what there was to be congratulated for; so I subconsciously must have assumed that no one else would either. Looking at her, it seemed clear to me that she was going to die. I felt that very few people working there, if any, would have put money on her survival. She was bruised black and blue; she couldn’t breathe on her own; and her very veiny skin was as thin as tracing paper. She was surrounded by tubes and wires and was placed in an incubator full of steam. Yes, I had given birth to a daughter and while that would usually be a blessing, she wouldn’t be with me for long. Where was the blessing in that?
I was destroyed; she was hurt; her birth was a trauma; and the family who didn’t even know she had been born yet, were soon to be devastated once they found out. I just couldn’t see any reason to be congratulated. Not one. It was all just a shower of shit, but what else was he supposed to say? The “congratulations” kept on coming too, and it took me aback every time.
Aside from the initial surprise that came with the word “congratulations”, I couldn’t have asked for a better, more calming, insightful and inspiring initial conversation about my daughter and her situation. He sat there calmly; casually almost; with wide–awake eyes and a mouth that wasn’t smiling but wasn’t pursed either. I liked the way he sat on the seat. He seemed relaxed. He didn’t look like someone that had just gone through an ordeal, having to stabilise a 23–weeker. He didn’t look like someone whose start to the working day had just been spent trying to complete an impossible task. And he didn’t look like someone who was shocked to see her make it there; something that was very important to me. I mean, maybe he was a master of disguise, maybe he wasn’t even there when she arrived at the NICU, or maybe the majority of the heavy lifting (not literally because she was as light as a feather) had been done before he got there. I don’t know how it worked that morning. I think he started work shortly after she was born. I know he wasn’t at my delivery, but at the time I didn’t wonder why he seemed so calm, I just welcomed it.
The tone of his voice, his body language, and the way he presented the information, all worked perfectly for me at that particular moment in time. It didn’t knock me back; in fact, it did the opposite. From the way in which he said what he said, I was able to see a tiny glimmer of hope. The tiniest of glimmers, but it was there nonetheless. Of course, I’d feel hopelessness again at some point during that day, but I left the NICU with some more fuel in my tank, all because of him and his natural, relaxed way. He said, “we’ve managed to stabilise her and we are happy with her oxygen requirements at this point.” He explained what all the tubes and wires were for, and why she was kept in such high humidity.
He said, “even though we’ve managed to stabilise her and she seems to be doing ok at the moment, very preterm babies often have a honeymoon period of 24-48 hours, after which they can deterioratevery quickly. Babies born at this gestation, we say, have a 20% chance of survival, if they make it to the NICU, but every day she lives, that percentage will increase by around 1%.” “Increase by 1%?”, I eagerly asked, assuming I had misheard. “Yes”, he said. I hadn’t heard this before; and the fire inside me ignited again, and I was ready to go at it. “1% per day. 1% per day. Finally, someone’s giving us something,” I thought. It was a tiny percentage, obviously, but a hopeful statistic in that it suggested she could move in the right direction. Some people may not have taken anything positive from that information. A measly 1% would be nothing but a grain of sand in a mile–wide beach to some, especially when we had just been told about what might await us after the expiry of thehoneymoon period, but it was something, and it was all I had. In a different hour, minute, and on a different day, I might have received it as the worst–news ever, but not that day for some reason.
Writing about and looking back at that first day at the NICU is a peculiar thing. I remember lots of bodies moving around during our first visit; I remember the room being heavily occupied, or at least it seemed that way at the time; but except for my daughter’s named consultant and the nurse assigned to look after her that day, I don’t remember a single face. All I can recall is bodies in blue. Many of these faceless people and believe me I’ve tried to put faces to the bodies (bodies of people that I now know were there) there that day, went on to become people that I/we grew very close to. Nurses and doctors, that we went on to bond with quite solidly and wholeheartedly. But that day, I had no idea who I’d go on to know, who I’d grow to love and that I’d thankfully, go on to spend the next four months of my life with. I was still affected by the gas and air, still groggy from a lack of sleep, still in shock from what had previously unfolded, and traumatised from what I was seeing; and, of course I just didn’t know them.
When you go through such an incredible journey with people; the most profound journey of your life; the people who have gotten down on their knees in front of you; the people who have held your hand, broken their hearts for you and you have truly felt that compassion, it’s quite surreal to think there was ever a time that you didn’t know them. Ever a time that they lived in the world and so did you but you never knew their names. At a time when your nearest and dearest are either not allowed to enter the NICU (which was the case for all family members, barring our parents), or allowed to enter for a very narrow window of time (grandparents were able to visit for a total of two, separate, one-hour period in each day); the doctors and nurses become your family. So to know that there was once a time when you felt nothing for them at that first meeting, is difficult to comprehend.
Now that the initial conversations and introductions had ended, the consultant started moving around the room, and we started chatting with our daughter’s nurse. She was so lovely. I watched what she was doing, in an attempt to get used to the situation I was hopefully going to be in for the long haul. Now that my brain started to settle, shall we say, I began to look around the room. I watchedother parents with their hands inside the incubators, doing things that they seemingly knew how to do,and it terrified me that I’d eventually be expected to do the same. They were seemingly familiar with their environment, and I wondered what their stories were. Looking around, I noticed that the incubators were personalised by the parents. They were draped with sweet baby blankets, and various teddy bears were perched on the tops, and I suddenly felt a little anxious. I didn’t know if I could do that; if I could buy those things; because buying those things would make me feel more vulnerable; and I was still very much in the needing–to–protect-myself zone. Then I noticed that each incubator had a cute and charming name card on it, and it hit me that she didn’t have a name. “A name! Her name! She doesn’t have a name.” We hadn’t got around to discussing a name. It didn’t seem important at 23 weeks of pregnancy. Being there without a name for our baby made me feel uneasy. I didn’t like it and I felt a sudden pressure to choose one. Eventually, I put the pressure of choosing a name to the back of my mind because I just wanted to look at her, be in the room with her and enjoy talking about her with her nurse, as if everything was ok.
After a while, Dave said, “let’s go back to the ward now. This is enough to take in for now, you need rest.” I knew he was right. I was willing to go then because I wanted to leave on as much of a positive note as possible. I’ve always known how to help myself and so I knew it was best to leave while I was relatively happy and calm after my conversation with our daughter’s consultant; but part of me also wondered whether this would be the last time I’d see her when she was alive. Part of me never wanted to leave her side; to stay there every second, until she slipped away.
As Dave wheeled me in the direction of the maternity ward, I smiled to staff as I passed and said to her nurse, “I’ll see you later on”, but as I left, I left my heart in that incubator, right by the side of her.