It was February 2nd 2017 and we had just left the Neonatal Intensive Care Unit (NICU) at the University Hospital Wales (UHW). We made our way back to the delivery suite, waiting to be buzzed through various doors before arriving at our destination. We had left the dimly lit NICU for the first time and had found ourselves back in the light; the light where normal life was; other people’s normal lives.

It was as if we had just come up from some underground bunker, back into civilisation, except that civilisation wasn’t the same for us anymore, because something incredibly dear to us needed to stay in the bunker: our newly-born daughter. She needed to stay in the bunker with a very special, skilledgroup of people, because civilisation would be her enemy. She belonged in the bunker; therefore wedid too; but it was impossible for us to be there every second of every minute of every day.  This was something I found very difficult to deal with.  

About four hours earlier, I had given birth at 23 weeks gestation. Our daughter was born 17 weeks early. She weighed 580 grams and was born in a very poor condition. She was extremely bruised;resuscitated in the corner of the room; and was ventilated at three minutes of life, because she was unable to breath for herself. As soon as the resuscitation process was complete, our daughter was taken away. I never got to hold her and saw her only for a matter of seconds before she was taken to the NICU.  

We were advised that she might not survive the delivery, and just before her birth, her heart rate began to drop rapidly, to a point where it was barely beating. What doctors had advised might happen, seemed to be coming true. My labour had started with the expectation on our part that I would likelybe delivering a stillborn child: it was probably what everybody else in the delivery suite was thinking too. It was the saddest of times; a really traumatic scene. But she did survive birth, albeit in a critical condition

Now, I was making my way back to the same delivery suite, but in addition to that I was leaving my very sick child behind.  
As I moved through the corridor, I caught glimpses of midwives and doctors at work; some werechatting, others laughing, and others looked to be discussing more serious matters. The world was still turning, but to me it should have stopped. Everyone should have known what had happened and everyone should have been sad. I caught quick glimpses of babies, all chubby and pink and cosy, and I thought of my own new-born baby, who resembled a miniature skeleton. A miniature skeleton with skin; very bruised skin; a skeleton covered in wires, and lying under a piercing blue light, in such high humidity that her nurse had to wipe the steam from the inside of her incubator for me to catch a glimpse of my daughter. The situation my new-born baby was in seemed more like a science experiment or a scene out of a sciencefiction film; and if I hadn’t thought so before, the passing glimpse of civilisation had brought home to me just how much that really was the case.

Somehow, though, at this point in time, I was okay. I was as accepting as I could be of our situation and ready to power through. I was journeying back to the delivery suite, riding a wave of positivity, which was probably denial. Like all surfers riding waves though, I would soon be knocked off the board into the deep water; spinning around uncontrollably into the blackness, unable to breathe and trying to find my centre, to be able to swim into the light again. In the months to follow, I’d get back up onto that surfboard a thousand times and more. But at this point, I’d somehow found myself calm after seeing her, able to avoid being overwhelmed by my daughter’s situation; still choosing to find positives in the conversation I had just had with her consultant. At this point in time I had faith. I mean, she had to be strong to have survived that labour; and to have responded to the resuscitation attempt at birth; and to still be alive four hours later. So, the honeymoon period of 24 to 48 hours that her consultant talked about; well, I was quietly confident that she’d live through that; and I was also confident that if she could live enough days to earn an extra 1% chance of survival per day, as he’dsaid, then she’d put enough 1%s in the bank to carry her through to a safer place, where she’d then be able to nail it. You see, I come from a long line of fighters; stubborn buggers who won’t give in. It’s who we are; what we do; and I knew she’d be a fighter too. I was going with that. Well, at this moment in time at least.

Back at the delivery suite, I felt tired: drained. It seems to me that the body and brain isn’t used to,and simply cannot be prepared for, that kind of physical and emotional stress and trauma. Not at that level and intensity, and not in such a short space of time. I’m talking, in the space of three days, ofgoing from normality to extreme feelings of helplessness, heartbreak, having hopes raised and dashed;going through a sudden, drastic change in my way of life, little sleep for days, giving birth just three weeks over the half way point of a full term pregnancy, a traumatic birth, becoming  a mother to a gravely ill child, the NICU and all its scenes, impossible decisions, devastating information, and if all that wasn’t enough, the knowledge that the future looked bleak.  I was tired.  But there was more to do.

The delivery suite was light. It seemed like a lovely winter’s day outside. I laid back in the bed. My midwife Angharad was around and doing everything she possibly could to make life that little bit better for us, and it was comforting to have her there. She was a welcome distraction in some ways. She checked my temperature and blood pressure and asked if we wanted tea. I watched her, and as professional as she was, I could tell she was still a little shaken up and trying to fathom all that had unfolded during my labour.  

I was aware that my parents still didn’t know my daughter had been born. By now she would have been more than five hours old, but I needed a little more time to gather myself and simply just ‘be’ before I made that dreaded call. What was concerning me, perhaps a little more at this point, was the fact that our daughter was nameless. It deeply unsettled me and the urgency to name her grew minute by minute.

During the two days and two nights at the hospital prior to our daughter’s birth, naming her wasn’t a subject that came up between Dave and me. The simple matter of her survival was more pressing, but shortly after my first NICU visit, I noticed something that brought the issue of her name to the forefront of my mind. There was a point during our first visit to the NICU, after all the important conversations had taken place and I had asked all of my initial questions and properly acquainted myself with my daughter, that I finally sat back and began to look around the Unit. It was at that point I noticed other NICU parents there for their little ones, with their incubators adorned with adorable teddy bears, blankets, and, lastly, the name of each child written on a sweet but sizeable illustrated, laminated card. And mild panic set in. I remember saying to Dave, “we need to give her a name.” Outwardly, it seemed like a passing comment but the inward urgency behind it made me feel flustered and increasingly unsettled.  

Once we got back to the delivery suite, the topic came up again. I’m guessing it was instigated by me because I found it such a pressing matter. I remember Dave saying, after we had thrown a few names out there, “Its okay, we don’t have to come up with one right now,” and my response was, “no, we do! She needs a name.” What I didn’t tell him was the reason behind my urgency. I don’t think he knew what was going on in my mind and I was happy about that. You see, since my journey back from the NICU, when I was feeling positive, dark thoughts had started to re-enter my head. These thoughts hadn’t completely consumed me but let’s just say there was a battle going on in my head. I would never have told Dave what was going on with me because he seemed to be doing okay at this point, and that’s where I wanted him to stay; for a long as possible.  

Of all the things that could have unsettled me at this point, her having no name probably topped the list. Underneath it all, one part of me had subconsciously accepted she was going to die. It was made very clear to us that her chances of survival were very slim. It was almost drummed into us, so it was etched into my brain. What I couldn’t accept, though, was her being on the planet for a very short time with no name; no stamp, if you like; with no identity. Yes, once she had died, we’d have a little while to think of a name, in time to put it on her death certificate and family and friends would forever be aware that we had had a daughter called …… but what I needed was for the people at the NICU to know her name, so that her existence, her time on the planet would be worth a little more than if she was nameless. You see, apart from me, Dave and our parents, the NICU staff would be the only people to see her while she was alive. Our siblings wouldn’t because they weren’t allowed in the NICU, so even with them knowing her name; they couldn’t go on to claim they’d remember her because they would not have met her. I remember thinking, “she has to be named today because if she dies today they won’t be able to remember her. One nurse might ask another, remember that 23 weeker last February?No.” The nurse might reply,  “Yes, remember, her parents were both tall with dark hair? She was from South Wales, he was from North Wales. Remember? No, sorry.”  I just couldn’t accept that ever being the case, and I needed her to have a name, to maximise the chance of someone apart from me and Dave remembering her. That no-one else would remember my daughterwas just too tragic for me to take. And I needed her to be named quickly in case she died at any minute. 

Dave, being a Welsh speaker, probably would have liked our child to have had a Welsh name. I wasn’t opposed to it but I didn’t want to limit myself to one type of name, whether it’s from a specific country or of a specific style. I wanted us to be as open minded to as many names as possible. To me, the more variety to choose from, the better. We hadn’t discussed baby names much at all throughout my pregnancy. I recall two occasions throughout my short pregnancy, where we touched on the subject and they went along the lines of me asking Dave what he thought of a few; him making a “meh sound; me asking him what his preferences were; and him saying he didn’t know. We’d quickly conclude that we’d think and talk about it nearer the time. The time had come.

One of the names I mentioned during my pregnancy was ‘Edith’, but Dave didn’t seem very keen on it at all. I loved it though. I knew not to push him or to protest too much because Dave is one of those people that if you push, he may dig his heels in. He’d do so without giving much consideration to the name at all. Underneath it all he might even have got to like it, but he’d never realise that because he’d be too tangled up in the battle. So I knew to keep schtum for a while and just mention it every now and again; sneakily dropping it in, painting all kinds of pretty pictures with it, so that if I decided ‘Edith’ was the one, I could hopefully make him come round to my way of thinking. You see, Edith, at this point in time, was more necessary than ever. I didn’t have the fight in me on the day of my daughter’s birth though and neither did Dave.  

I had really liked ‘Haf’ for a name. It was short, sweet and pretty and had a lovely meaning. For those of you that don’t know, ‘Haf’ is pronounced ‘Harv’ and it means ‘summer’ in Welsh. I didn’t know if Haf was the one but it was one I could have seriously considered. However, during one of our few conversations about baby names, Dave put the lid on it. When expecting our baby to be born at the end of May, he’d said, “It won’t be summer Nicola, so it doesn’t make any sense. It seems silly.” I didn’t think it mattered to be honest but he did. He wasn’t up for it when thinking our baby would be born in May, so I didn’t bother mentioning it back at the delivery suite in early February.  

Looking at my husband, who had witnessed our seemingly dead, tiny baby come out (something I’d not witnessed) and who seemed completely traumatised by it, I thought he deserved to choose her name. Especially as he had been so strong and supportive throughout, even though he was going through the worst kind of hurt, and during a time where the dad can often be overlooked, I wanted to give him something. ‘Efa, pronounced ‘Ever’, had been another Welsh name we had mentioned and that Dave had particularly liked. I liked it a lot too. I didn’t love it but I’d grow to and so I said to him, whilst lying in the bed, still a little groggy from the gas and air, “if you want to name her Efa then that’s fine.” It would be unusual in my circles, it was Welsh, it was pretty and I realised there was some kind of poetic message in it; a reminder of her, in more ways than one, every time her name was mentioned. I imagined that even after she passed away, there would be times when she would be discussed and it may have been necessary to say, “it’s forEfa.”

Dave said, clearly with the same thought process as me, Nic, if you want to name her Edith, you can. You can call her anything you want. After all you’ve suffered through, you’ve been so brave andworked so hard throughout that labour to get her out quickly when her heart rate was dropping; hername is yours to choose. If you want Edith, I’m happy with that.” My husband is a thoroughly decent man. He’s kind, fair and understanding; and its reasons like this that will allow you to see why. I remember being touched but saying, “no it’s okay, we’ll call her Efa. I’m happy with that. It’s lovely. Okay.” He said, “as long as you’re sure.” I pondered a little. We looked at each other, settled on that but neither of us seemed really satisfied. You see, Efa just didn’t seem right. She wasn’t an Efa. There was no great reason behind the name for either of us, and given the circumstances, we needed a great reason. 

I should have jumped at the opportunity to name her Edith when Dave gave it to me. It didn’t take me long to do so but I didn’t do it instantly and I’m ashamed to say why.  

Within those few seconds of deciding between Efa and Edith, I remember thinking, “Efa is lovely but I love Edith. It’s my favourite name in the whole world but this baby is going to die, and if I were to have another daughter, I could name her Edith. I couldn’t go on to call another daughter Edith if this baby passes away.” I never actually said the next sentence to myself but it was as if I was suggesting to myself that it would be a waste of my favourite name. I’m writing this and it hurts. How could I have allowed myself to think, even if only for a split second, that the name should be saved for a child that would go on to live? I want to point out that this thought process lasted for all of about five seconds, before I shocked myself out of it, but still, I instantly felt guilty. I felt as though I had betrayed her and as though she could sense what I had thought, and as though she felt her mother was okay with replacing her, which couldn’t have been further from the truth. I could have gone on to have another five children if she passed away, but they’d never replace her. She is unique and my heart would have yearned for her for the rest of my life regardless of how many other children I’d go on to have.

My thought process actually made no sense, because although it had not been verbalised between us, I’m sure Dave and I, had we discussed it, would have both been in agreement at that point, that there’d be no more children, regardless of this particular outcome. We were very newly burned, scarred and traumatised and there wouldn’t have been a rat’s chance in hell that I would have ever been able to withstand the worry and anxiety of another pregnancy. Not after this. Not after this being a healthy pregnancy, confirmed by my 20 week scan, to have then given birth, inexplicably, less than three weeks later. We were never going there again and so I know that the only reason I started thinking this way about naming her Edith was because I was too afraid to get attached. If I gave her a name that wasn’t particularly special to me, then it wouldn’t hurt as much when I had to say goodbye to it and to her. That was nonsense of course; I was in; all in; but I was frightened and therefore desperately trying to look for ways to get out; to lessen any current or possible future pain. This was my Edith and I had to accept that. I did accept that and without telling Dave what I had just been thinking, I said, “okay, let’s call her Edith. Her name is Edith but we’ll call her Edie.”  “Okay,” he said. We looked and smiled at each other. We were strangely settled. It felt right. That’s who she was. It was a perfect fit for her, and it was clear Dave and I both felt the same.  

Suddenly, it felt as though we’d always had her and it was difficult to remember life before her. It felt as if the name was meant for her, as if there was a reason for it. And there was. I didn’t realise that giving her a name would give us so much joy; even given the circumstances. Naming her made it all the more real, but in a good way. It provided us with a little piece of normality during this terribly dark time, even if only for a short while. None of this had been normal for us. I didn’t get to be pregnant for very long, I didn’t pack a hospital bag, I didn’t have the excitement of a baby shower (whether I had wanted one or not); we didn’t take that exciting but nerve wracking trip to the hospital;but naming our daughter gave us one of those normal first moment experiences that we had longed for. And in some weird way, it felt so much more special than if she had been named under a normalcircumstance. Given the circumstances, it was as positive an experience we could have had naming our first born child. We had a daughter called Edith. We had created someone that was here and who now had a name and therefore a place in the world. We had a child called Edie and we suddenly felt like parents.

You see, the name Edie, more than ever at this point, felt right. It had been the name my sister would have used, had either of her sons been a girl. It was my maternal Grandmother’s name. She was christened Edith but was better known as Edie. My Grandmother was one of a kind in many different ways and when I think of the phrase “Girl Power”, she is the first person that springs to mind. She was so unintentionally in your face with it, it was hard to miss. She captured the essence of it entirely. Edie Anstey was girl power. Of course, I realise now that my mother was there all along oozing girl power. From a very tender age, my mother has had to deal with incredible loss and hardships that would floor many people for good, but you don’t always notice what’s right in front of your eyes. My other grandmother too, for sure, but my Nana Anstey was so in your face with it, sometimes it was all you could see.

Nana Anstey was born in 1912 and was one of 9 children. She had my mother late in life; twentyfive years after her first child, to be exact. Her mother had died from a terrible infection when Edie was 6. Her father, who worked a difficult job, managed to keep all the children together in a small terraced house in the Rhondda. He raised them alone until they were grown.   My Grandmother’s brothers and sisters all passed away before her. She was the youngest child. She lived through the loss of her son Peter, who died of cancer when he was 33 years old; her grandson Neil, who died when he was 26 years old; and her husband Colin, who passed away a long time before her. I could go on, but despite dealing with terrible losses, she was strong and never lost her spirit for long, even though I’m sure part of her would have been forever broken. Now, I know during that era, in working class Rhondda, it wouldn’t be unusual to lose a parent at a young age, and it wouldn’t be unusual for an entire tribe to live in a two bedroom miners house and have little money. These were tough times, but what I have always found unusual, no, I should say ‘unique’, about my Grandmother, was the way she conducted herself and lived her life during the years I knew her and, from all accounts, before. She did it her way. She danced to the beat of her own drum. A big old bass drum! She was a devoted wife and mother, but in her house she was treated like a queen on a throne. My grandfather spoiled her; something he wanted to do and chose to do; and something he absolutely did. He was a carer, a nurturer, a provider, a worrier; constantly worrying to make sure that she and their children and grandchildren and practically everyone else he came into contact with was alright and happy and fed and watered and cared for. He did most of the cooking, all of the tasks usually carried out by men during that era and probably lots of the household chores that were usually carried out by women at that time. When he passed away, my Grandmother felt his loss incredibly, in more ways than one. She lived her life being the leader, something that in many households at that time wasn’t the case.

From what I’ve been told, it was a man’s world back then, but not according to my Nan. In all honesty, from what I remember of my Grandmother, she was a little bit high maintenance at times, a little bit dramatic and slightly crazy, in all the good ways. She was a straight talker, charismatic, kind, and a thoroughly decent person. She oozed self-confidence and everyone knew her, was drawn to her,and liked her; well maybe some didn’t but that would only be because she probably put them straight when they were out of line. I was proud she was my grandmother. Even in her 80s she stood out. She was statuesque and incredibly well turned out. I remember her showing me her new coat which cost £100; I was about 13 or 14 years old and before I could even register what she was proudly thrusting in front of my eyes, she’d shriek, whilst smiling at it and stroking it like a cat, “now don’t touch it,just look at it!” I remember saying to her, “Nan, why did you pay £100 for a coat? You don’t go anywhere to wear that type of coat.” And she replied, seemingly offended, “I do! I go to Sheila’s every Wednesday to have my hair done.” Sheila was a hairdresser who ran a small salon at the bottom of my Grandmother’s street. My Grandmother would saunter in, making her entrance like the queen and looking not too dissimilar either, and as a teenager I remember being embarrassed by the overkill. Sheila would often ring my mother throughout my grandmother’s visit and make excuses why Edie needed to stay longer. Everyone in the salon would be in fits of laughter because my Grandmother would simply light up the place. That was her. Living life, despite all it had thrown at her. She was strong.

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My Grandmother Edie and Grandfather Colin pictured above, at my parent’s wedding reception in 1979.  Note my Grandmother’s natural pose; it oozes self confidence.

 

The main reason I wanted to call my daughter Edie was because I wanted to name her after a great woman, and deep down I felt the name would be hugely beneficial to us all. At a time when I felt helpless as her mother, I would cling on to anything to try and help my child.  Whether it made no sense, was based on superstition, or was something minuscule, if I thought there was even the slightest chance it would help, I’d do it. So I hoped and prayed that by naming her after my Grandmother, the strength Edie Anstey had incorporated into the name, would be passed on to the little girl who had become her namesake. I prayed that my Nan would do all she could to keep Edie down here with us, simply because she loved my mother, she loved me and my daughter; but the crafty side of me also felt that if there was a child on earth named after her, the vain side of my grandmother would require her to do everything in her power to keep little Edie down here with us,because she’d want everyone to know that she was the reason for the wonder baby’s name. I realise that my thought process makes no logical sense but at a time when you have no control over an outcome; an outcome you want so desperately to come good, you’ll resort to all kinds of ways of thinking and actions, to try and grasp on to something; anything that you think might help. At this point in time, hoping that the good karma and strength attached to a name would do us right, was all I had.  

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My Grandmother at her 80th birthday party, giving a speech, with me in the background looking on, aged 12.

 

I have since come to learn that the meaning of the name ‘Edith’ is ‘Rich in war’. Ordinarily, I wouldn’t be taken with that meaning but given that this was about to be the biggest war or battle she’d likely encounter, she’d need to be rich in war and I prayed she’d be just that. I didn’t know the true meaning of ‘Edith’ at the time and so I like to think that it was all meant to be from the start.

To me, the name Edith is elegant, sophisticated and a classic. It’s pretty and feminine but not too ‘girly.’   It’s kind of a kickass name as I see it, and even though abbreviating it to Edie, girlies and cuties it up a bit, it does so in a quirky way. I’m not into these “made up” names, (each to their own,of course): I don’t see them as different or unique in the way other people do, simply because many try to be different or unique, so it becomes a common theme. I’ve always loved oldschool or traditional or vintage or whatever you want to call it, but I didn’t want a common old name. Of course, I can’t control what people call their children in the future, but in an era where “old people’s names” have been popular for quite some time, I’m happy that Edith seems to have flown under the radar. To me, an old fashioned name, that has stood the test of time, but flies under the radar at a time when old fashioned names are in, covers all kinds of cool and is a “different” as there is!

With the name chosen and the knowledge that Edie was down the corridor, it was time to phone home. It was the call I dreaded to make. In fact, I couldn’t do it; Dave did. I have a close family and what affects one of us affects us all; but my immediate family is incredibly close. When one of us is in pain, the rest of us physically feel it. We find carrying on a very difficult thing to do until the individual/s struggling are okay again. One falls, we all fall; but we all help each other to get back up together. The thought that my baby could be making an early arrival, at this gestation, and the fact that I was in hospital as a result, was a massive worry and a weight on the shoulders of my parents andsister. Going through their days with that weight on their shoulders was one thing, but making the call to tell them that the baby had been born, knowing that this would make their world fall apart, was another.  My throat started to hurt as soon as Dave started dialling the number, and my heart raced as I could hear the ringing. I was sat upright in my bed, but laid up against the pillow with my neck stretched and face pointed towards the sky. My eyes were closed and my face grimaced slightly as if I were in physical pain. It was all too much. Then Dave spoke: “Hi Diane, its Dave.” Knowing my mother, I could imagine her response. I could imagine the tone of her voice; the nervous, hesitant way in which she would have said, “alright?” I could feel her heart racing and it hurt mine. Dave put her out of her misery quickly, or added to it; I guess it depends on how you look at it. He said, “Nicola had the baby, at 8:08 this morning.” I don’t know what I was expecting but my mother didn’t scream or outwardly cry, and I breathed a sigh of relief. Instantly, I wanted to say, “Pass me the phone” but then I realised her silence made me feel worse. In my mind’s eye, I could see through her calmness; a woman who was just too gutted, too deflated and too hurt to exert any kind of energy. She was very brave, trying not to be upset in front of him and adopting this approach to not show that Edie being born at this stage was terrible for so many reasons.

We knew it was, of course, but she didn’t want us to know that she thought the same. Dave said, “It’sa girl” and my being torn about whether I wanted to speak to her or not got stronger. I had always imagined I’d be the person who told my parents that my baby had been born; and I had always said I wouldn’t reveal the sex until they came to visit at the hospital. That would probably have been excruciating for them, but I do love a surprise and seeing people’s reactions. I deeply felt as though this moment was slipping away from me because this would be the only moment; we’d never have another; but I just couldn’t do it. Hearing my mother’s voice would have been too much. I was keeping it together this way. I could hear Dave weakening and the frown on my face intensified. I lay back scrunching my eyesshut, like a child does when they want something to stop or go away. You see, only two days prior to this, my mother and sister had thought that my midwife Carmen had said I was having a boy. She didn’t say that and I explained as much to my mother, but she probably still had it in her head. The fact that she was a girl would have been a wonderful surprise as Edie was their first granddaughter. It was at this point that I felt I should ask for the phone, when Dave said, in the loveliest way and in the purest tone, “and we’ve called her Edith.” I instantly felt regret, the type when you know you’ve missed the boat, that the moment is gone forever and they started to cry. That silent type of cry with lumps in their throats, swallowing back tears. I soon realised it was the right way to handle the situation. It felt to me that he was giving my mother a gift. Edith was her mother’s name and it was a tribute to the most oneofakind lady I ever met! He didn’t have to agree to it, it wasn’t his grandmother but I could feel kindness in the way he told her and an eagerness to let her know. He put the phone down and I didn’t want to think about my mother and how she would cope during the seconds afterwards, being at home. It was too much.

I can’t remember how long it was before I headed to the NICU again; I’m guessing it was a few hours; but after some rest, I visited Edie for the second time. I was desperate to be with her for fear that I was probably running out of hours, minutes, and even seconds. I wanted to soak up every inch of her while I could. At the buzzer, saying the words, “its baby Mardon’s parents”, for the second time ever, was just as wonderful, strange and terrifying as it had been the first time around. Once inside the NICU, faces were becoming more recognisable and the sights and sound less surprising.  

At some point, I said to Edie’s nurse, “we’ve given her a name now.” With raised eyebrows and a quiet smile on her face, I continued, “its Edie. Well, it’s Edith, but we’d like her to go by Edie.” There were a bunch of people near and around her incubator, and soon they all knew her name, as did the nurses that were further away. Everyone seemed to like it. Thinking back to it now, it warms my heart,as it did then, to remember how much attention they gave to the naming of our baby. They made such a lovely fuss, and an incredible amount of effort was put into expressing an interest in the milestone and telling us how much they liked her name.  

You see, I go on and on to others, telling them how wonderful these doctors and nurses are; how talented and skilful they are; I go into detail about how they saved my baby and lots of other babies I know, and those I don’t, but people often won’t realise the other things they do too. The small,incredibly kind gestures they carry out, that make all the difference and have nothing to do with talent and capability, but everything to do with kindness, human decency and generosity of heart.

Such gestures are often the things that stick out in your mind the most. Paying a great deal of attention to the fact that we’d named her and trying to provide us with a measure of normality is not something that they are paid to do; it’s genuinely done from the goodness of their hearts. They go above and beyond, and this is why, if you’re lucky enough to go home with your little one, leaving the NICU can be bittersweet. I appreciated them all behaving as though this milestone was the same as any other; just as it occurs when a healthy, full term new-born has been named and not like it actually was, with her on death’s door, seemingly only going to live with the name for a number of hours; maybe days, at most. I could almost forget that was the case. They took part in the here and now and it allowed me todo the same; at least for a little while.

As one nurse searched for the name cards, I smiled; choosing to be happy in this moment, and, with a number of nurses around me, “ooing and ahing” as if they’d never seen the cards before, I carefully picked one while they stood there, looking on. It felt as though I was with a bunch of girlfriends huddled up for one of the countless reasons it happens in life, but these people were strangers. In fact, the only one I had spoken more than a hundred words to, was the nurse assigned to look after Edie that day; and, let’s face it, we were strangers too at this point. But that’s the NICU; an all-round intense environment, where you’re all thrown in at the deepend together, whether you like it or not; it gets real; really real; and there’s no time for a “settling in session. Within minutes of being there you can find these people holding your hand, talking you through your worst fears, giving you support when you’re at your lowest, choosing name cards with you and, as time goes on, sharing your baby’s milestones with you; taking almost as much joy in them as you do. You didn’t know them 4 hours ago but now they are your new sisters, brothers, your new mothers and fathers, your new best friends and your coparents. There’s no time for dinner and a film to get to know each other; within seconds you’re in a full blown relationship. And whilst that may seem a little strange, it isn’t; and that is what’s strange. It’s the new normal.

I picked the cutest card of the bunch. It was sweet and girly, with a charming illustration of a little brunette girl with pigtails and rosy cheeks. The nurses agreed that it was the best one and one nurse began to write Edie’s name on it. “How do you spell it?, she asked. “E, D, I, E”, I proudly said. I don’t think I had ever been so proud to have said anything before in my life. She stuck the card on the incubator and said, “there: lovely.” And we both smiled. Edie’s nurse commented that Edie was an old fashioned name. We both chatted about how we liked oldfashioned names; and she told me that her daughter had one too. I told her how I loved her daughter’s name and had considered it myself at one point. Another nurse said, with a beaming smile, Oh, there hasn’t been an Edie here before. She’s the first one, I think.” Instantly, I felt that my mission for Edie to be remembered was complete.  Now, with no power to control our path going forward, the rest was up to fate.

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