This is my third blog post covering the day my daughter Edie was born and admitted to the Neonatal Intensive Care Unit (NICU) at The University Hospital Wales (UHW).
I’ve covered almost everything, from her dramatic delivery at 23 weeks’ gestation and her resuscitation at birth; from how she looked and how she was whisked away to the NICU in an incubator without my having seen her; to how it felt being at the delivery suite without her. I’ve talked about our first NICU visit; our second; and how it felt being in such a terrifying, alien environment. I’ve talked about making the dreaded call to my parents to tell them she’d been born. Now, I’m going to tell you about what remained of that first day.
I’m going to pick up again from my second visit to the NICU. I had just informed the nurses that we’d named our daughter “Edie”. It made me feel she had a place in the world. Granted,it wasn’t likely to be for long but in that moment when they all “oooed” and “aaahd”, I could pretend life was normal. It was a special moment, but one that was short lived, because the first issue with Edie’s health was soon brought to my attention. Edie couldn’t have been more than 7 hours old. Or maybe I’m misremembering, and the issue came first and the name reveal came after; I can’t remember the order in which it unfolded, it’s all a bit of a blur. However, I do remember the details of both events quite clearly.
Edie’s nurse said, “can I show you something?” My heart stopped still. My fearful reaction was instantaneous. “What on earth has happened?” I thought. Holding my daughter’s tiny foot, the nurse showed me a nasty breakdown of her skin. It was at the top of the foot, where it meets the bottom of the shin; on the joint. It was quite significant in size and very red. It looked raw. I couldn’t understand how her skin could break down like that in just a few short hours. It wasn’t like that when we visited a few hours before. “How did that happen?” I asked. “I’m not really sure,” she said. “It could have happened when we took the sats probe off her foot and the skin came off with it or it could just be because she’s very premature. It does happen. We’ve only just noticed it. We’ll keep an eye on it.” I feared Edie was in pain. I didn’t ask because I didn’t want to know the answer. Her extreme fragility terrified me. I found the possibility of her skin being torn off by a sats probe, due to its thinness and immaturity, very disturbing, and it happening just because “it does happen,” didn’t make me feel any better either. Her skin was very red, extremely bruised and looked wet. It hadn’t yet evolved to where it was meant to be and it looked nothing like the premature baby’s in the incubator next door. The little one next door was born at a later gestation than Edie. The visible differences between Edie and the other premature baby’s there had started to upset me. Edie lay on an incubator in 95% humidity to maintain an adequate body temperature and to try and prevent her skin from breaking down. But it had started to. “The humidity is not doing it!” I thought. “So what now? Will it break down all over her body? Every inch?” Will she end up like a burns victim? Will the pain of that kill her? And if not the pain, will infection set into her open wounds and will the infection kill her?” Again, I didn’t verbalise any of these fears because I was too afraid of the answers. Since Edie’s birth I had become increasingly obsessed with the possibility of infection. If you saw Edie you’d understand why. I felt she was a sitting duck.
Today, Edie’s foot is scarred from this breakdown. In fact, she has a matching one on the other foot too. The scars are growing with her and I actually love them. They are some of her many war wounds that she wears with style.
Little did I know how Edie’s skin breaking down would pale in comparison to the issues she would go on to contend with but it was terrifying all the same. I was still trying to come to terms with being there; that a NICU even existed. I was still trying to get over the shock of the sight of the full term baby whose insides were hanging up on a hook inside his incubator, next to Edie’s. I was still trying to cope with the sight of my own child who was so unbelievably tiny and bruised and in desperate need of further “cooking” inside my tummy; and I was still trying to comprehend how she was there, in front of my eyes, and not inside my body as she had been three days before.
In an attempt to process the fact that Edie’s skin had broken down without losing my mind, I tried very hard to focus. I sat in a chair and began to look around again. I carefully watched the nurses; taking in what they were doing and attempted to familiarise myself with the patterns and goings on inside the NICU. I was so committed to being calm and collected, cautious and self-protective, so very early on.
I find it very difficult to be vulnerable and upset in front of others, even at a time like this, when a mother can go through no worse and it would be completely expected. I just don’t like the way it makes me feel, having others see me vulnerable. It feels completely unnatural to me. I feel embarrassed and even when I’m screaming inside, I always manage to swallow back tears. I get it from my father; my father and I are the stiff upper lip types. My mother also just gets on with things and picks herself up but is for sure more inclined to shed a tear than what me and my Dad are. We are not hard towards others that are suffering; we’re quite the opposite; but we are hard on ourselves. We do our suffering in private. It’s the only way we know how to do it. It’s something my husband has struggled to understand and has been offended by in the past because even in front of him, who I love and trust wholeheartedly, I find it difficult to be vulnerable and appear weak. Now he’s used to it, we joke and he calls me “Nicola stone heart”. He knows really that I’m anything but. It’s not sustainable to be this way though; something has to give because you suffer worse in the long run, holding in that type of hurt and fear. It only took a day or two before the weight started to drop off me. I’m thin anyway so I can’t afford to lose any weight. My complexion turned a ghostly white. I’m like my mother like that. If we’re in pain it tells on us and it doesn’t take a genius to figure out we’re ill and hurting. My words will say I’m fine but my body and face will tell another story. Natural calm in a situation like this can only come with time, if it’s going to come at all. When you’ve seen enough; a lot; too much; when you’ve heard the sounds over and over; when you’ve learned what saturation levels and oxygen pressures mean, when you can decipher the monitor readings and when you know when an alarm means panic and when it’s just asking someone to pay attention, for example.
I remember the parents of three babies being in the Intensive Care Unit (ICU) at that moment. There may have been others but I only remember three. There were the parents of twin “26 weekers” (born at 26 weeks’ gestation) directly opposite Edie, with their hands inside the incubators, seemingly assisting with the babies’ “cares” (washing the babies etc.) and I was surprised by how tremendously brave they were to do that. I assumed they had been there a while but they hadn’t; the children were born the day before Edie. I didn’t know they were 26 weekers at that point. In fact I knew nothing about them at all. I remember thinking, “my God, they’ve got two in here. Imagine that. What if they are 23 weekers too?” I was consumed with worry and fear over Edie’s fate and I wondered how a person dealt with that with two babies. You have to, I guess. What else can you do?
In the incubator next door was Wyatt, a 28 weeker, born via Caesarean section as a result of IUGR (In utero growth restriction). I immediately loved his name. It’s an age old name but one that you don’t hear around these parts and I thought with a smile, “huh. Original. I like it. Wyatt; like Wyatt Earp. How cool. Quirky but old.” Standing over Wyatt’s incubator was his mother Jess. A complete stranger to me at this point but Jess would go on to be my teacher and my friend. She had deep purple/red hair tied up in a top knot or a mum bun as it’s called, and she wore a long black cardigan over her clothes. She watched over Wyatt’s incubator; hands in there, fixing things the way she liked them and educating and involving herself in all Wyatt-related matters that had occurred that day. I watched on in attempt to find out what would be expected of me as a mother in this environment and basically to see what was what.
What I learned observing Jess was that she was a tiger mother. It was immediately obvious. She was there, confident, not afraid to ask questions and question the answers if necessary. She was clearly appreciative of the care that Wyatt was being given and had the utmost respect for those caring for him. But she was watching. His incubator was adorned with lovely baby bits and it told me that she was confident he was going to go home at some point. She wasn’t afraid to invest in him. I was though; in my daughter. Well at this stage anyway.
“You can touch her. Don’t be afraid to put your hands in”, said Edie’s nurse, and I immediately, reactively, pulled back. I sat back in my chair and said, “oh no, that’s okay, thanks. I’m ok. I’d rather not.” Afraid she was judging me, I continued, “I will though. In time.”
I was afraid I might hurt Edie or that I’d knock a tube or a wire out of place. She was surrounded by them after all. They were everywhere. I was afraid of how she would feel. Would her skin feel like skin? Would it be slimy or sticky or…? I was afraid of letting the warm air out when opening the port hole but most of all I was afraid of infection getting in. I wanted the doors to stay closed as much as possible and I cringed every time a doctor or a nurse opened them and put their possibly germ infected hands in. They had to of course. Those hands going in there were crucial to her survival.
I watched as nurses sat in pairs preparing medications at a small metal table with wheels. I watched as they chatted away whilst doing it as if it was a normal occurrence. I forgot, of course, that for them, it was just that; a normal occurrence. One would check the medication type and the dosage and the other would double check, reading out loud to be sure everything was in order. They sat there with white, plastic disposable aprons on and I sat watching them, trying to make sense of it all.
I’d taken in the collection of wires and tubes that surrounded Edie,, and I’d taken in the monitor above her, to the right of her incubator. I’d taken in the ventilator machine and another monitor to the left of her incubator, but it wasn’t until my eyes followed the nurse walking away from the metal table with wheels towards Edie, that I noticed what I call “the medication stack” or “rack” tucked away to the right of Edie’s incubator, underneath the monitor that was placed up high.
I don’t know what it’s really called. It was this large, upward facing, rectangular (I think) device with rows and rows of tubular spaces where you could place a syringe in each space. The syringes were those large thick ones that didn’t have a needle in them. Instead, they were connected to tubes or lines that went into Edie’s body, administering each drug into her. The nurse tapped away on its computer thingy and set some sort of timer and the medication was slowly being pushed in. Once the job was done, and it’d take a while, an alarm(another alarm) would go off. She received rows and rows of meds and it shocked and defeated me to see how much she needed. I didn’t ask what they were at this point. I didn’t have the heart to know. The amount of each med she received surprised me as she was so tiny and I just stared at them going into her body, thinking “what if they’ve made a mistake.”
If I hadn’t already realised it, it was at this point that I realised I had to have complete faith in these human beings; that they held my whole heart in their hands.
Next to Edie, in the corner of the room was a baby girl. Her parents weren’t there at this point in time. She had clearly been born prematurely but was about 6 weeks older than Edie, so she was quite a bit bigger. You could actually see her in her incubator. It seemed to me that she was the longest staying resident of ICU at that point in time. She wasn’t quite a senior about to graduate into HDU (high dependency unit) though. It turns out I was right as she spent a number of weeks as Edie’s next door neighbour before her graduation. This little lady almost put the fear of death into me during my “sussing it all out” period on that first day. She did so in the days to follow too. Less so though, as I started to figure things out myself day by day. Monitor alarms had been sounding off regularly in ICU; to the point where they had already become background noise but I remember the exact point when her alarms rang for that little bit longer and it immediately grabbed my attention. “Ping, ping, ping, ping” and it kept going. I immediately looked over to her as the “pings” continued and I could feel my body tensing, my toes curling and I started to fidget in my seat. Frowning, I urgently looked at Dave and then looked around at the nurses to see where they were and what they were doing. This little one’s nurse was away from her incubator; busy; and there were nurses at the med table and others carried on tending to their own babies. I contemplated calling out, “excuse me there’s something wrong with that baby, her alarm is going off,” but what I wanted to do was scream, “someone hurry, that baby is f@&£!ng dying!!!” I’m so glad I didn’t say anything at all. Knowing what I know now, I’d be so embarrassed.
In reality the “ring off” wasn’t very long at all but it was the longest I’d heard and it almost sent me, already living on my nerves, spiralling out of control. On a subconscious level I’d been tracking things; timing things; sounds and behaviours etc., in order to prepare myself. I’d done such a good job of doing so, that the first change in situation almost sent me over the edge.
I mean, did I really think they couldn’t hear her? Of course I knew they could hear her. So what was going on? Did I think they were purposely ignoring her? Of course not. So should I have executed some common sense and realised they knew what the alarms were likely to mean? Yes. And that they knew things were under control? Yes, of course. And that this situation, even though it was new to me, wasn’t new to them? Of course.
It’s all so bloody obvious in hindsight but when you’re there; terrified; more frightened than you’ve ever been and in complete and utter shock, you can’t see the wood for the trees. You can’t think straight, let alone apply common sense to anything. This little one’s alarms would ring off regularly, they’d bellow in my ears, while the younger, smaller babies’ alarms, seemed to be more under control. At least at this point in time. Her constant demands for attention had led me to believe that she was dying and that no matter how hard the nurses were working to save her, they were losing the battle. She wasn’t. Months later, when Edie was suffering with reflux, it was mentioned in passing how her next door neighbour suffered terribly with reflux and how she used to send off her alarms like crazy. There would have been other reasons at times of course but reflux certainly played its part in her noisy presence at ICU. I remember smiling and telling the nurse how I remembered Edie’s little neighbour, and how I had once thought she was dying. We talked about where your mind takes you and the assumptions you make when you’re brand new to NICU and you don’t know a thing. It’s a process; a journey; and you have to figure lots of it out yourself. It’s a brutal lesson but one you’re forced to take. I felt like I was sinking in this miserable environment and I’d soon learn that this persistent noise from the alarms of some machines would become standard. It would become life. And that my own little baby, although calm at this very early point, would go on to set-off the alarm on her machines multiple times a day; more than any other baby in there, for quite some time; seeing to it that she worked the doctors and nurses to the bone.
Dave and I headed back to my room with heavy heads and hearts, in a cloud of confusion. Like two lost souls we walked away. I can’t remember how long it was before the next NICU visit but I know I went back alone. Dave had been there three times to my two and he needed a break from that room and all it represented and displayed. Back at my room we went over and over and over the situation; conveniently picking up on sentences and comments that were made to us at NICU, things that we found positive or liked the sound of, to convince ourselves that she was going to be okay. Being away from her was more difficult after the second NICU visit, than it was the first, than it was after her birth. Every additional glimpse of her, every moment longer in her presence, every additional uttering of her name, made the thought of living without her more difficult to comprehend.
I had noticed that our conversations had begun to centre on Dave’s internet research of 23 weekers and I didn’t think it was a good idea to continue to carry on obsessively searching the net. It was difficult not to, of course. The information is all there at your fingertips. We spoke about what we had discovered; comparing what doctors had said to us against what we had read; going over and over and over things. Whilst we may have found “success” stories, we were more likely to have been provided with devastating information and while we were doing okay at this point, I felt it was foolish to keep on reading, when a single sentence could cause it all to come crashing down. It just wasn’t sensible and Dave agreed. I noticed he was lower than he had been, that his thoughts were more negative than they were earlier and that he seemed to be losing grip a little and just like that I had involuntarily switched to being the inspirational voice, to care for my husband. After a pep talk, I said “let’s stay off the internet now. We don’t need it. We have doctors and nurses to answer anything we want to know.” He agreed.
I visited the NICU again. I was alone. It was dark outside now and would have been after 7pm because I found myself in the room with a complete new set of people. The nurses’ hand-over had taken place and the new faces threw me. Of course there’d be a hand-over: the first set of nurses weren’t going to work around the clock every day of the week; but it just hadn’t occurred to me that new faces would appear. I might have been told this but it didn’t stick. The vibe in the room was different. It was very quiet. It was night time and it was as though the babies knew. The nurses were quiet, and pretty much all that could be heard from time to time was that rhythmic beeping of the alarms. I was much more “with it” mentally at this point as the gas and air and intense shock were leaving my system. All of me was in the room this time. No part of of me was detached; removed; it was all there and the quietness of this new style NICU that I had just walked into, brought me to a new depth of sadness. The silence made me realise that the shocking scenes I had witnessed earlier, like babies’ bits hanging up inside incubators, loud noises, terrifying alarms and the full room, were all welcome distractions. Taking in all the crazy things distracted me a little from my own situation and that was okay. I much preferred day time NICU. This version of the NICU was tragic. The quietness and the peace were just too sorrowful. It left you alone with your thoughts, consumed by your critically ill child, wondering if she’ll survive with the weight of the world on your shoulders.
With the effects of the shock and medication subsiding, every hour that passed during Edie’s first day of life got increasingly difficult and I became increasingly anguished. The saddest form of sadness possible. Walking into the NICU this time, I was defeated, deflated, weak and simply lost. A pitiful sight. The nurse looking after Edie introduced herself to me. She had long, very dark hair tied back in a pony-tail, and like Edie’s first nurse, she was softly spoken and lovely. With a heavy heart I asked how Edie was doing and with a purse-lipped smile she nodded. Over the next few days I came to realise that each nurse had a different way of saying she was critically ill but holding her own. On uneventful days, no one could ever say she was doing well or was fine because she wasn’t. Uneventful was great, given the circumstances, but they couldn’t use terminology like that because in life, in general, she couldn’t have been further from it.
Some would say, “she’s been a good girl”, and others would say, “she’s been lovely”, “she’s had a peaceful night” or “well,you know, there’s been no change.”
Whilst them being able to say those things for those first few days was amazing given her gestation, the fact that “a peaceful night” was a highlight in the life of your child, was crushing.
When Edie’s nurse nodded, thought about how she was going to answer and used the word, “okay”, I felt a wave of emotion wash over me. It was the straw that broke the camel’s back. It was the point where I almost broke. It was the crescendo of emotion. Tears appeared from nowhere, like someone had flicked a switch. My eyes were glassy and I tried to speak but couldn’t. I knew that if I spoke I would start to cry and so I bit my bottom lip and, with my chin wobbling, I lowered my head, scrunched my shoulders, took a deep breath and composed myself. I couldn’t look at her but just kept nodding my head, biting my lip, looking at my feet and breathing as though someone was sitting on my chest. About to speak, she beat me to it and with a sigh and a frown she said, “Oh I can’t imagine what you are going through”. I smiled at her, nodded and managed to release a breathy “thank you.” By now I had managed to look her in the eye. I still couldn’t speak but I owed it to myself to admit this was hard; that in that moment in time I was struggling. It was just a look in the eye, a head nod, with no verbal response but that was huge for me.
We began to speak and she asked me how I wanted Edie to be fed. “Fed?” I asked. “You mean milk?” “Yes”, she said. It took me by surprise. It hadn’t occurred to me for a second that Edie would be fed milk. Babies inside the womb don’t receive milk, and she was certainly still supposed to be in the womb. I guess I assumed that she would only be fed through the nutrients that were already being administered to her through a tube or a line. “Oh I didn’t realise she would receive milk”, I said, and I explained why. “Yes”, said Edie’s nurse. “Babies like this weren’t in the past. It was thought that the best way to proceed was to not use milk and to only administer the nutrients etc. but recent studies have shown that the earlier they receive milk the better.” “Okay”, I said. With my mind swirling, I tried to think about how to answer. You see I wasn’t planning to breast feed Edie, for reasons I’ll go into in depth in another blog written solely about expressing at NICU.
I asked, “what are the options”? That may seem like a silly question as the only options would be breast milk or formula but Edie clearly wouldn’t be able to take milk directly from my breast, so I was trying to quickly figure it all out; thrown. “Breast milk or formula”, her nurse said. “If you wanted her to have breast milk, you’d need to express. You can be shown where to go and what to do. You wouldn’t be able to express via the pump at this point because you’d never get enough milk to go through the pump but you’d squeeze it directly into a colostrum syringe. Your midwife would show you back at your room.” “Okay”, I said. “Could she receive someone else’s milk?”, I asked. “She could”, she said. “But it wouldn’t be as good as mine I take it?” “No”, she said. “Yours is like a special recipe made up specifically for Edie. It’s specifically made up for her immunity and more. A mother’s breast milk is specifically made for her child”. “Okay”, I said. “And I take it breast milk has more benefits and is better for a child like Edie than formula milk is?” “Yes”, she said. “There’s no pressure on you to express but I’ll be honest and say yes it is.” And enough was said. Trying to get my head around it all, I said, “Okay, I’ll speak to the midwife.” Shortly afterwards, I left the NICU and headed back to my room.
By now we had moved from the delivery suite to a new room in the post-natal unit. I was lucky enough to be in my own room and not on a ward but I was still surrounded by newborn babies. Babies with healthy cries, ready to start life in the way they should, and parents on cloud nine. In amongst the cries and glimpses of pampered, squishy, sweet-smelling little ones, I mentioned that I planned to express to a midwife and at some point that evening she was there with a colostrum syringe, asking me if I knew what to do.
“Just squeeze your nipple” she said “and hold the tube under it and collect the drops of milk.” “Don’t worry if there’s no milk. It wouldn’t be unusual for nothing to come, with you having given birth at this gestation. Your body might not have recognised it’s pregnant yet in that respect. Just give it a try and if it doesn’t come we’ll try again later. Don’t worry about it.” Looking back now, it’s not rocket science, what you have to do, but I was so shocked and confused by all that had unfolded during the last three days, that I overthought everything and yet I couldn’t think straight. “Where exactly do I place the tube? Could the milk just squirt out and I miss it? If I missed it, would that be it? Would there be any more this time or would I have to wait hours before more came?”
I looked perplexed. I can’t remember exactly but I think I tried it and wasn’t quite successful and she said, “do you want me to show you?” “Yes, please” I said. She took over. There I was, in this new room, lights on fully; exposed, dazed and confused, bare chested, with a complete stranger hanging off me, squeezing the milk out of my breasts. As she squeezed and the milk came, I felt quite a strong pain in my stomach. It almost felt like contractions. It was like clockwork. As soon as there was milk there was pain. Quite intense pain. Now, I’m no stranger to pain and discomfort; I’ve lived with rheumatoid arthritis for almost half of my life and I now have a heightened pain threshold as a result. I spend every day in pain and rarely feel the need to mention it; to anyone. In fact, I often don’t register that I am in pain until it’s gone above the point that I’m used to. It’s standard: a part of life. But this pain in my cervix that I had suddenly found myself dealing with, was a little too much for me to ignore. I told the midwife because I had no idea what it could be. I thought something could be wrong. I hadn’t been through this before. She explained that breastfeeding encourages the body’s release of oxytocin that makes the uterus contract and that it was normal. She asked me if I wanted paracetamol and I said yes. I had never felt so low or so vulnerable in my life. It was another one of those moments where I pondered how life had taken such a turn in such a short space of time. She squeezed again and a second or two later the milk came. It wasn’t a great deal; literally a couple of drops, but after her comment about the possibility of my body not recognising it’s pregnant, I was so relieved to see it come. Separating myself from my reality, I found it fascinating that even though I hadn’t leaked any milk during pregnancy (something I know some mothers do), here it was in front of my eyes, purely because my body’s released a baby; even though nature had not yet run its intended course. Not by a long shot: I’d given birth 17 weeks too soon. I pondered how amazing the human body is; how amazing mine was; until I remembered that it had let my baby down immensely and I excluded my body from the list of all the amazing bodies ever to have lived. Mine didn’t belong on that list.
The NICU nurse now looking after Edie did such a good job of explaining that I mustn’t panic about the milk and that a tiny bit is perfectly normal, that I don’t remember being upset when what I produced was just a couple of drops. The colostrum syringe was tiny; it held just 1ml of fluid and I was nowhere near filling it up. I did wonder what good they could do with the amount but thankfully my natural feeling was to be relieved there was milk. I planned to work on it and progress.
At some point I went back to the NICU alone, with my milk. Dave was exhausted and I think he had to draw the line for that day. He couldn’t do it again. I forgot how quiet it was there at night and how the silence only made room for the sadness to shine. The silence gave the sadness its moment of glory. It’s real moment of glory. There was no distraction, just a room to drown in misery. It turned out that the initial feeling of shock had actually been my friend. Now, I was exposed to reality; frightened and as low down as a person is ever likely to go. I was a hopeless creature; a mother who’d given birth to a baby, who it didn’t seem likely would live. It was all there written down, in all the books, online, everywhere you bloody cared to look. She was a 23 weeker and statistics say “no”, or at best highly bloody unlikely. I was that type of low.
I approached Edie’s incubator and she just lay there lifeless, except for the odd twitch. She lay under the blue phototherapy light, with minuscule black cushioned glasses on to protect her eyes from the light. She was so bruised. She looked pitiful and I wondered if her brain was able to understand what was going on. Did she ask herself why she wasn’t in her perfect, homely little sack of water and why she wasn’t floating around anymore? I asked myself if she wondered why she wasn’t feeling so good anymore and I asked myself if she wondered where I was, why I wasn’t with her and if she wondered why I had let her down. I wondered if her brain at this stage was able to register fear. I hoped not. I knew this would be my last visit of the day. It had to be. I couldn’t do it anymore.
Seeing her, I wanted to fall to my knees and scream. I knew that if I went again that day, I would be ill. I mean really ill. Possibly to the point of no return. I knew this because of the reason for my multiple visits that first day; because every time I went to see her, I was saying goodbye. I didn’t reveal this to anyone. Yes, I was going there to check on her, to be with her, to be updated and I sincerely hoped I wouldn’t have to say goodbye, of course, and every time I saw she was still alive, the relief oozed out of every pore. But I was also secretly going to get that last glimpse of my daughter; to try and remember what her fingers looked like, how the lines in the palm of her hands fell and what it felt like to be in her presence, one last time before it was too late. Saying goodbye to my baby for the 4th time that day had gotten to be too much for me to bear. That, and we were literally coming up to midnight. But I couldn’t do it anymore, at least not for a while. I needed to close my eyes and hoped my dreams would take me somewhere very different; somewhere nice.
“I have the milk”, I said, holding up the syringe as I walked in. “Oh good. Well done,” she said. “That’s really good.” She was very kind and I appreciated it, but part of me couldn’t help but wonder what the point of it all was. Why were we doing this? Edie wasn’t going to make it and by expressing I was attaching myself to something; someone that couldn’t possibly stick around. I was investing my whole heart and I was terrified to do so. It wasn’t about me of course and I was never going to say no. For as long as she fought, I was going to do it; I was going to be in her corner, but I was terrified to be all the same. After a little while I left the NICU, petrified at the thought of what the next day would bring. I walked out wondering if this was it.
At my room I remember it being dimly lit. It was pitch black outside. Dave seemed better but I had hit a particular low point. The darkness surrounding me not only echoed how I felt inside but it added to it. It felt as though someone had been piling bricks on top of my very narrow shoulders all day and now I had reached the point where my knees were about to buckle and I was about to hit the ground. I can’t remember if this sequence of events back at the room took place before or after my last NICU visit but I remember what happened inside that room clearly. I was completely grief stricken; riddled with misery and not at all willing to accept that she may die. I completely understood the statistics and evenforgetting them, it was clear for all to see she was critical. She was critical, underdeveloped and tiny. Biology hadn’t completed its mission yet. I got it. But I couldn’t accept it. I was bratty almost in my unwillingness and in my defiance. I didn’t act out; I didn’t take it out on anyone, except maybe Dave a little. I was so very angry.
Dave spoke on the phone to his father and when he’d used the wrong choice of word, I waited for him to put the phone down so I could question why he used it and correct him with what he should have said. I did what I had done throughout this experience. I played on and used his love for me to back him into a corner and emotionally persuade him to tell me what I wanted to hear, whether he believed it or not. “Why did you say ‘if’? Why didn’t you say ‘when’? You think she’s going to die, don’t you? You don’t think it’s possible she can survive, do you? Do you? Do you think it’s possible?” “Of course it’s possible. Yes I do think it’s possible,” he’d say. I’d take that, having achieved what I wanted and I’d run with it for the next few hours. It was my fuel. I couldn’t help it. I’d never acknowledge what, subconsciously, I already knew: that if I’d rephrased the question, he’d give me an honest answer and it’d bring me to my knees in a pool of devastation.
I did it to Amy, one of the midwives that looked after me during my admission, prior to Edie’s birth; I’d go on to do it to NICU nurses; I did it to my mother worst of all and I did it to friends and family in a more subtle way, and if they didn’t get it and failed to play ball, I’d dislike them temporarily.
“I’ve been looking at photos and reading stories of 23 weekers online,” Dave said to his Dad and “what I’m reading and seeing doesn’t seem like her. It just doesn’t. Some of them didn’t have full ears, or their skin looked different or their bodies didn’t yet seem in proportion. She’s not like that.” This was Dave propping himself up, looking for positivity, instilling hope into himself and I was near him, conveniently championing this kind of talk. “Nope. No she’s not. She’s different. Yeah she is”, I’d repeat, like a parrot or an echo.
Dave and his Dad went on to talk about how there is sometimes that X factor when it comes to a situation this seemingly hopeless, like strong genes for example; or there has to be that one case that defies the odds; the exception that proves the rule; and maybe she’s it. Dave’s father was a doctor. He wasn’t an obstetrician, a paediatrician or a neonatologist and he’s not the type to proclaim he knows more than he does. I knew that but he was a doctor and I was going to go with what he just said, conveniently so on my part. For as long as I could. The trouble was, the reality of the situation was so in your face, it was difficult to maintain the positivity.
He asked how I was. “She’s okay”, Dave said, “she just doesn’t want Edie to die.” That was Dave’s way of telling his father that the reality of the situation was dawning on me and I wasn’t doing as well as I had been and I was getting worse. There was silence. They never said it but they both knew that was the most likely outcome and at that point I wanted to shout, “you’re supposed to say she’s not going to die, Chris!!!! That’s what you should be saying!” But I didn’t. I wanted to scream and punch myself in the face. I wanted to ram my head into the wall and beat this pain out of me. It made me fidgety, it made me itch and pace. I didn’t want it in me but I couldn’t get rid of it. I was so angry, and I could not believe no-one could make it stop! They were all useless.
I went into the shower. I hadn’t had chance to have one yet. I sat there on the seat, lifeless with the water running over me. I hoped it’d be magic water. It wasn’t. I sat there with enormous breasts, sore and hard like stone, with what was dried blood running off the seat. My round belly had gone. It had only just started to grow, and now it was gone. Everything came crashing down. Finally. It came to a head. I sobbed; uncontrollably but silently. Dave was the other side of the door and it’s the type of thing I have to do in complete privacy. My shoulders jolted and I pulled at my own hair. I screamed as hard as I could without making a sound. A silent scream. I opened my mouth, closed my eyes and tensed my abdomen to try and release what was hurting me. Then I spoke to God. “I don’t know if you’re up there. After this I’m even less certain. But if you are; tell me why? Why have you done this to us? To her? She’s just an innocent child. Did I do something wrong, because if I did I’m sorry. Please don’t take her. I need her. I need her more than you do. She hasn’t come easy to us. We’ve had to jump through medical hoops to have her and she’d have the best life. You’re taking a child whoselife would be made to be worth living. I don’t understand it. I know I only speak to you when I need something and I’m sorry. Please let her stay. Please. And I promise you I will ensure you she’ll be raised and guided right. If you don’t you’ve lost me forever. I’m gone.”
It’s probably not a good idea warning God, but that’s who I am when I’m angry. What can I say? I spoke to all my family members who’ve passed, some of whom I’ve never met; but mostly I spoke to my cousin Alun. Alun was like a brother to me. We were best friends. We were so close that sometimes our honesty with each other was brutal. But with the brutal honesty there was understanding. It was a given. Just as you are with your immediate family. Politeness isn’t necessary because they are always going to love you. They/you don’t have a choice. Alun passed away 10 years prior. He died unexpectedly, suddenly on the rugby pitch. He was 25 years old. He was the life and soul of the party. He was someone that everyone knew but very few people knew him like I did. I was with him the night before he died and when I received the news the next day it felt like someone reached in and ripped my heart out. I called on him. “Al, you know I’ve had a baby and you know she’s really sick but I need you to have a word and make sure she stays down here with me. Please. I’m begging you to do all you can. What the hell is He doing? What are His reasons? Have we done something wrong? I need you to convince Him to let her stay and I need you to not stop until you succeed. If you don’t I’ll never forgive you. Up there you are able to feel what I feel for her and if you love me at all you’ll make sure she stays. Please do it for me.”
I left the bathroom and got into bed. We set the alarm for me to wake and express. I thought this was the worst day of my life; but I was wrong; the worst was yet to come.