The new normal (part 1)

Another morning with the same view of grey concrete, under the same bit of sky with the same muffled tones outside our door. The sound of the squeaky tea trolley with its clanging cups and saucers was there again. I hadn’t dreamt it. I had woken up to this world again. When you sleep you can escape, you can temporarily duck out of the horrors occurring in your life … but then you wake. And waking up put me back in the postnatal ward at the University Hospital Wales … without my baby.   

Our daughter was a patient at the Neonatal Intensive Care Unit (NICU). She lay behind multiple locked doors and was incredibly sick. She lay there in a very humid incubator that cared for her incredibly fragile skin, that helped maintain an adequate body temperature (something she couldn’t do herself) and that protected her from infection. Her every breath was monitored, as was her heart, oxygen saturation levels and all else to do with the human body that can be monitored. A state-of-the-art incubator and technology, an endless list of medications, medical expertise, procedures, and around the clock care, was the only way she was going to survive; and even with all this to help her, survival was highly unlikely.  She was ventilated, surrounded by wires, with lines and tubes going into her body. Her skin was sticky and translucent, and her eyes were fused shut.   

Her name was Edie, and it was love at first sight. Edie was born 17 weeks early at 23 weeks plus 4 days’ gestation. Everything had been going well with Edie during my pregnancy so when she was born spontaneously it was an enormous shock and a heart-breaking blow. We had spent four years trying to conceive when we discovered I was pregnant, we were elated. It was a dream come true.  

I had been admitted to the hospital at 23 weeks plus 1 day into my pregnancy after what we thought would be a routine check to be “on the safe side”, turned out to be anything but. At the assessment unit I was informed I was 2cm dilated with bulging membranes (amniotic sac) and I was taken straight to the delivery suite. In that instant our world fell in on us.   

An hour before this terrible news, I had been at work with no inkling that anything was wrong. I was happy and finally expecting a much-wanted baby. At the hospital I couldn’t make sense of what I was being told. I struggled to understand how everything could be so wonderful at the start of the day, where life had never been better, and our future filled with so much hope and promise, but turn out, by the end of that day, to be the worst experience of our lives?   

We were informed that if our daughter was born before 24 weeks’ gestation (when a foetus is considered viable for life outside the body) she would be considered a late term miscarriage.  

I remember the NICU doctor using the word “miscarriage” while Edie was happily and healthily kicking away inside me. I couldn’t understand how a baby so healthy in utero could be considered a miscarriage purely on the basis that my body was letting her go. The unfairness of it crippled me.   

It was explained to us by doctors that at 23 weeks’ gestation Edie’s chances of survival were extremely low, at 15% to 20%, and that 50% of the surviving “23 weekers” (babies born at 23 weeks’ gestation) will live with moderate to severe disability.  

We had no idea that every week inside the womb is vital for foetal development. It’s obvious to a point but who knew that at this stage that a foetus’ chance of survival will more than double when born at 24 weeks compared to 23 weeks? We didn’t.  Who knew such little time would make so much difference?  

We were told by doctors that Edie’s lungs would be a huge problem for her if born at 23 weeks, that the severe lack of development in the lungs would make survival extremely unlikely. At 23 weeks the lungs are still water-based organs, inhaling and exhaling amniotic fluid for practice. It’s not until 24 weeks’ gestation that they become air-based organs, but even then, the lungs are still massively underdeveloped. Her brain too; and her gut. In short, no organ is ready at 23 weeks’ gestation. Our hearts were shattered.   

Because our local hospital was a high grade NICU, we were asked if we wanted doctors to attempt to resuscitate Edie at birth if she was unable to breathe for herself (as proved to be the case).  

Edie was born on February 2^nd, 2017, at 8:08. She weighed 580 grams (1lb 4oz) and was severely bruised from head to toe because of the delivery. We were advised by doctors that she may not survive the delivery: she was that fragile and that early. She was born without receiving the full course of steroids to mature her lungs and she received very little magnesium to mature her brain. Her birth was traumatic, and the room where she was born was filled with nurses, nurse practitioners, midwives, obstetricians, and neonatologists. She was born not breathing.  

My husband Dave asked the obstetrician who delivered Edie, “Is she dead?” The obstetrician nodded her head to confirm her belief that Edie had not survived her birth. It certainly seemed that way to us, watching what was going on, and seeing how tiny she was. So, Dave and I lived in those first moments of Edie’s life believing Edie had passed away. But Edie had different ideas.  

Edie was born with sepsis and with a heart rate of 40 beats per minute. Dave and I looked on horrified as the NICU team seemed to struggle to intubate her. It seemed to take an eternity. That’s how it felt. Edie was ventilated at 4 minutes of life, receiving 100% oxygen. As the doctor who intubated her and who had instantly become our hero walked past the foot of my bed to leave for the NICU with Edie, he turned to us and said, “the odds are not good”.  The impact of his words crashed down on me like a tonne of bricks. Right then and there, I wanted to curl up and die. I was in hell.  

My emotions changed constantly. Hormones. Trauma. Shock. Fear. Heart ache. It’s a lot for the mind and body to deal with. Especially all at once.  I had gone through the trauma of giving birth to a baby way before I was supposed to and in a labour that unfolded in the most traumatic of ways. The biggest trauma for me though was having her here on the planet being almost certain that she wasn’t going to stay. How could she?  

My hormones raged, I had spent my fourth night in hospital not expecting to have been there in the first place, I had become someone’s mother and my child was residing at a grade 4 NICU. My body felt in physical pain. It felt bruised. My chest ached, my eyes burned, my head hurt but most of all my heart hurt. I remember in those early days feeling desperate to be with Edie, and for weeks after too. I’d never felt such desperation before.  My toes curl now, and my back still arches when I tune into the tension and frustration that occurred back then; when the nurses wouldn’t open the locked doors that separated us quickly enough, or when someone who wanted to speak to us delayed my getting to Edie, or when I had to leave her to go and eat.  

It had been made very clear to us that it was unlikely Edie would survive. We believed her days on earth were numbered and so I wanted to soak up as much of her as I could before she left us. I wanted to be in her presence every nano second that she was here. I wanted to breathe in the same air, see every inch of the light of day that surrounded her. I wanted to be present in the same world as her for as long as possible. I was desperate to go to the NICU to see her because our minutes with our daughter were seemingly numbered, so I didn’t want to waste one.   

I focused on this crinkle, and that curve, the way one toe bent, and how she had fingers like mine. I drove myself silently crazy knowing that I’d never be able to contain every little detail of how she looked, but I still tried. I was desperate to get to NICU and then desperate to get out.   

At NICU, I was surrounded by terribly sick babies clinging to life. I felt drowned by the beeping of machines and that continuous hum that occurs when enough people are talking in the background. The heat, the fake light, and again … the babies. Everywhere I looked there were tubes, lines, bedside procedures, tears, stress … and even the abdominal organs of one of the babies were on show in the incubator next to Edie’s.   

It was the most distressing environment I had ever been in, and I couldn’t understand how we had got there. My desperation to be with Edie didn’t stop with me; I was so eager for my parents to be with her too, that it made me nauseous.   

There was an 80% chance that Edie would die and so the situation made me feel like I was sitting on a ticking timebomb. She could have died at any minute. Her situation was that precarious. I wanted my parents to be with her time and time again, so that if she did die, they too could remember as much of her as possible. I wanted the same for Dave’s parents too. I wanted our parents to see Edie so badly, especially given that our siblings were not allowed into the NICU and would probably never set eyes on her.   

At that time the NICU was very strict with its visiting policy for reasons relating to infection control and so babies’ parent’s siblings couldn’t visit, and grandparents could only visit for two, separate, one-hour slots a day. One in the afternoon and one at night. But only one grandparent at a time could enter with one parent. So, if four Grandparent’s visited during the same session, they could only see Edie for 15 minutes each.   

I truly believed that Edie would never come home with us, and it killed me to believe my sister would not only never have a relationship with my daughter, but that she’d never set eyes on her in person. It felt to me at that time, that if Edie died, she’d never have existed in the lives of most of our relatives (outside of our parents). In their hearts yes, in their minds too, but not physically. It felt as though she’d be a myth.   

My sister wouldn’t be able to talk about Edie’s little traits with my aunty, for example. Or Dave’s sister and brother couldn’t converse about the size of her fists or her perfectly shaped head, because they wouldn’t have seen her. She would have been born, and have passed away, and they’d never have been in the same room as her. It would be like she’d have vanished in a puff of smoke. So, I needed my parents to be with Edie as much as possible so they could pass on all the little details about her to the people that matter to me. So that they could contribute to the realness of her and talk about aspects of her that we never noticed.   

My parents came to see Edie two days after she was born. I remember their startled faces. My mother was broken but pretended to be strong for us. My father looked like a rabbit in the headlights and pretended to be strong too. I don’t recall him putting his arms around me and I was glad about that. I don’t deal very well with showing my emotions or enjoy physical attempts of comfort from others. Even from my dad. He didn’t offer a great deal in the way of traditional words of comfort and support either and I was happy he didn’t. He spoke as though what was happening wasn’t happening. He attempted to pretend things were normal; to dust over things. He finds it hard to speak about his emotions and so do I, but the important thing was that he was there. That’s his way of showing his love.   

My poor mother looked as though she would cry at any moment, so I avoided too much eye contact with her. I realise that may sound selfish of me but my paying too much attention to my mother would have encouraged her to be upset, and she didn’t want that. Neither did I. Her face was pale through the stress, she looked haggard and to me as though her throat was hurting. You know when you’re full up with emotions and you’re fighting and swallowing back tears, and it physically hurts? Well, she looked as though she was doing that.   

As always, my mother’s priority was us, so as much as she wanted to cry, she held it in. We (her kids and grandkids) are both what gives her strength and what makes her weak. She lives for us. And so, even though she was yet to meet Edie, Edie was already her life. The pain my mother felt (like my father) was incredible, and yet their love for me, saw them hold it together.   

I find it incredibly difficult to express certain emotions in front of people. Even my mother and Dave. I can’t cry in front of them, or I should say I can’t let myself cry in front of them, and I don’t really know why. I guess I don’t like how it feels to be vulnerable in front of people; even the people I trust the most … and even when my daughter’s life was on the line. It makes no sense because I’ve not been brought up in an environment where expressing feelings was frowned upon. I have two wonderful parents who have showered me with love and support, and who are more than happy to listen to me talk about my feelings and woes. But it’s just the way I am. I guess I’m like my father that way. He doesn’t show emotions like that either. But to see my mother that day, and my father too, but my mother especially because she looked so pitiful, was very tough to take.   

“Mam she’s tiny,” I explained, trying to prepare her for what she was going to see. “Yeah, I know,” she said. “No, listen,” I said. “You don’t know because you’ve never seen anything like it. Your mind won’t allow you to realise how tiny a human being can get. Her leg is as thin as a pen, her head is the size of a clementine, and she could literally fit into the palm of your hand. We’ve all seen tiny babies out and about, but this is not that. This is another level. Babies this small are not out and about, they’re out of the public domain, because in it they would die. They’re in an ICU.”   

She just looked at me, as though the penny had dropped, and my father did too. I was trying to protect them from the shock that was sure to greet them. I wanted them to be as prepared as they possibly could be. I continued, “she has a tube down her throat, and one going into her belly button. She’s surrounded by wires and machines, and they make a noise. Ok? You’ll probably hear the doctors and nurses talk about her as though you’re not there but try not to let what they say scare you. No: just don’t listen to it. And know that there’s a good possibility they’ll carry out a procedure on her in front of you. And there’s an extremely high chance that her monitors are going to go off, they’ll have to tend to her, and it may even be an emergency.”   

I was so dedicated to protecting and preparing my parents for what lay ahead of them … the heart-breaking sight that was their precious granddaughter, and the terrifying and alien scenes of a NICU, that I wasn’t prepared for how I would feel seeing my mother and daughter together for the first time. It turns out that having my mother and my daughter together was a dream come true; a dream I never thought I would realise until it was put in front of me. It was a beautiful thing.   

As I watched my mother cautiously but bravely approach Edie’s incubator to meet her granddaughter, her eyes were wide and filled with love and tears at the same time because that love made the reality all the sadder. She wore a beautiful smile. “Hello my ange …” she said. And before she could finish the word “angel”, I said, “stop! No please don’t call her that.”   

The second Edie was born I had become incredibly superstitious. It was my way of maintaining control. What I intended to say was, “if you call her that, then she may end up as one”, but I didn’t have to explain. My mother is obviously as mad as me because not only did she know what I was saying without explanation, she completely got it. And so, she said, “oh yeah! Right, ok.” “Hello my darling; it’s Nana. Oh, you’re a beautiful girl.”   

It was one of the most beautiful and crushing moments of my life. Here was the woman that raised me, talking with the daughter that I was probably never going to get a chance to raise. There I was, benefiting from the fruits of the relationship I have with my mother, which made me realise all I was going to miss out on with my daughter. It was painful.   

And here was my daughter, a granddaughter that she wouldn’t get to know, and that very special relationship that exists between a grandmother and a grandchild that was probably never going to be. My parents were incredibly brave that day. They behaved with strength and dignity. It was a beautiful 15 minutes spent with my mother and Edie and as I walked my mother out of the NICU, I prayed she’d get to see Edie again.   

It’s only during the years after NICU that I realised it must have been incredibly difficult for our parents, who love Edie, but who, unlike us, couldn’t spend every minute with her. Like me, they must have wanted to soak up every second in her company, but they couldn’t. They weren’t allowed. They had to walk away, not knowing if they’d ever see her again. And unlike us, if anything had gone wrong, they wouldn’t receive a call telling them to come running, they’d be kept outside.  

I’ve been told that the love a grandparent has for a grandchild is the most special of all, being one’s love for their baby’s baby. I later discovered that that afternoon my mother went to my sister’s house and broke down in tears. Hiding from my two-year-old nephew George who instinctively knew something was wrong with Nana, my mother said to my sister, “Gem, there’s no way she can survive.” “What do you mean?” my sister said, afraid to ask. “You’ve never seen anything so tiny in your life … there’s no way she can do it; no way she can pull through, and I don’t know how they are going to cope if she doesn’t.”   

That day my mother started smoking again after years of having given up. Dave’s sister also told me after time had passed that she remembers saying to the family, “if she dies, I don’t know how they are going to get over it.” I don’t know how we would have either.   

In those first days Dave’s parents and his sister travelled down to Cardiff from North Wales to see us. His parents visited Edie one after the other. Dave took them to see her. Dave’s sister wasn’t allowed to see her, so she sat with me in the concourse. I told her I was sorry that she couldn’t go in. “That’s ok”, she said. “I wanted to see you two and I wanted to be close to Edie. I wanted to be where she is. I feel close to her here, being at the hospital.”   

This was an incredibly sad time. At NICU we were surrounded by misery and at times I felt I was suffocating. Misery at NICU was bad enough but the longer we were at the hospital it became apparent that misery was pretty much everywhere.  It’s not something you necessarily notice when you’re in and out of a hospital attending a clinic as an outpatient, but being there long term, it seemed to be everywhere you looked. There was no escape and it felt that way; that heavy.   

The University Hospital Wales (UHW) is the biggest hospital in Wales. Its concourse is like an airport departure lounge. Maybe not as flash.   

When Edie was a patient the concourse contained a post office, eateries like Starbucks, and independent shops. It also had W H Smiths, Boots, a TIGER shop, a reception desk, and a registry office. We visited the concourse regularly for tea breaks, and we often bought food there too. It was vital that I consumed lots of calories because I was expressing milk for Edie, and I think I probably ate the Starbuck’s carrot cake every day for the 109 days Edie was a patient at the hospital.  

I had to eat a lot which was difficult because when I’m ill or stressed food is the first thing I reject. The carrot cake did make eating easier though; it was good. Regardless of my lack of interest in food, I needed no encouragement to eat once I was told it was beneficial to my milk supply. If my milk would help Edie, even in the smallest way, then I was going to do everything in my power to give it to her. Aside from my needing to express milk, both Dave and I were undergoing the most vigorous and brutal journey of our lives and it just couldn’t be done unless we stayed relatively healthy.   

There were other reasons to regularly visit the concourse. The longer you’re at the hospital, the more likely it is that you’ll need to post a letter or buy sanitary products, for example. We were at the hospital from morning till night and so the concourse became very convenient. Before Edie I enjoyed sitting in the concourse. I’d sometimes sit there with a cup of tea after an appointment. I enjoyed people watching and wondered why each person was there. You’d see hundreds of outpatients rushing in all directions to the relevant departments, you’d see family and friends visiting patients, in-patients having a change of scenery away from the ward, sometimes dragging a drip around with them, and often in their pyjamas. You’d see doctors, nurses and other hospital staff on their breaks and making use of the concourse’s other facilities. You’d see them attending meetings whilst enjoying a coffee with hospital colleagues and with people seemingly from outside.  

In short, before Edie was born it was quite an entertaining experience, sitting in the concourse, until one day Dave and I were sat there together, worrying intensely about Edie. It was a bright sunny day outside. It was cold because it was February, but the sun was shining and beautiful. The weather outside contradicted how life felt for us at that time. I think about how it felt to sit there now, and I can feel the weight of that day on my shoulders. It was a particularly bad day, when Edie was getting sicker by the minute and everything doctors had warned us about was coming true. Every issue they had to bring to us was horrendously alarming. There was nothing good; there was no positivity.  Every issue in every part of her body was incredibly serious; life threatening; and it seemed like she was leaving us.

We went to the concourse to escape, for a change of scenery before one of us had a mental break down. We sat there, utterly sad, not saying very much at all, and when we did speak to each other it was to revisit what we had just been told by doctors, to try and convince ourselves we had misinterpreted it all. We went over and over the same thing, torturing ourselves. We did that a lot. I remember sitting there talking to Dave, forcing myself to eat something that was going down in lumps, and the occasional person would catch my eye. It may have been someone’s drip, or ailment, or beautiful baby (the sight of which broke my heart). These minor distractions ended abruptly when suddenly, and from nowhere, there was an almighty scream. It was piercing. It echoed through the concourse, bouncing off every wall. It was horrifying and it stopped people in their tracks. Very busy people who were rushing to get places just stopped. The reason for the scream was evident. You couldn’t mistake it.

I was afraid to look up and yet my head had already turned to its direction. Everyone was still, except for the person who screamed, and a nurse who had taken her in her arms and was already leading her back to the ward she had just left. It seemed that this lady had left a loved one at the hospital ward. She was wearing her coat and a handbag on her arm. I assumed she thought she’d be returning to visit again because the scream sounded like one of surprise. It appeared that the nurse had run down after her, just catching her before she left the hospital to tell her that the person she had just left, someone who she clearly loved dearly, had passed away. She’d had to have loved them with a scream like that. It was one of pure pain and I can see her now walking back, huddled underneath the nurse’s arm pit, tucked into her side, walking with a childlike vulnerability. It was pitiful to see, and my heart broke for her. Dave and I both sighed with sadness but didn’t comment because we knew what had happened. I fought back tears and Dave just looked down and shook his head. It seemed like the whole world was suffering, and I didn’t know if I wanted to live in it anymore. It certainly seemed as though those within the hospital walls were suffering, and we were trapped inside. I felt like I was trapped in a nightmare. I looked up at Dave; he looked desperately sad.   

I remember one day early on in our journey, walking back to the NICU from the hospital concourse. The route was still new and required a bit of concentration on our part. You can easily get lost at the hospital because of its size and confusing layout. I remember reaching the top of some stairs, turning right, and when looking for further signage, when I saw, ‘THE WELSH REGIONAL NEONATAL INTENSIVE CARE UNIT’ … and everything come crashing down. The weight of it all was intense. The unexpected realisation brought on by this visual was a blow. That happened quite a bit during Edie’s NICU journey … the sight of something taking you completely by surprise and just bringing you to your knees.   

How could our baby need intensive care?   

What did we do wrong?   

Why were we being punished?   

And not just need intensive care … but care from the Welsh regional unit, where the sickest of all babies are. Special care was far too inadequate for Edie’s needs, as was a High dependency Unit. She needed the expertise and equipment that only this Unit could provide. A grade 4 NICU where babies can be transferred from all over the UK. The combination of those words – Welsh Regional Neo-Natal Unit – put an inexplicable fear into me. How was it that we were we in that moment journeying to an intensive care unit? And to visit our child of all people?  

I’d never heard of a NICU before. I never knew one existed but at that point life was leading us towards one. I got to thinking that for all the signs at a hospital giving directions that you may need to follow as a parent, this is the sign (along with some others, I know) that you’d rather run away from. And yet there we were, walking towards it, like two lost souls, floating around in a confused haze. During those days I was confident one minute – I would have faith that my daughter would prevail and could have lunged at anyone that told me they felt differently, even if it was just by a look they gave me, I could have torn them to shreds. Then the next minute I was rolled up in a hypothetical ball – defeated by the situation, telling myself and anyone who’d listen that she wasn’t going to make it; that she couldn’t; doing so to prepare and protect myself.   

I found myself a mother without her baby, in an environment where I absolutely did not want to be. I was traumatised with a brain that was desperate to block things out, yet having to listen, concentrate, and get up to speed with terrifying medical terminology, when all the while I either felt like I was floating through space or completely aware of my surroundings, in a special kind of hell.  

We were in an environment, even outside of the NICU where we were surrounded by trauma, like that dreaded day at the concourse. The rest of the hospital wasn’t necessarily a place to escape, no matter how hard we tried, and then the time always came to return to the NICU to deal with all its terrors. It was relentless.   

We were surrounded by the tears and worries of other parents, the babies, and we were being delivered the worst news by doctors. The sounds of the machines and the alarms was traumatising and there were other stresses too … like having to figure out the medics in front of you and learning how to navigate your way around so many different personalities, and different styles of delivery. I didn’t realise this was a problem for me at the time. It was subconscious. I’m a natural analyser and so I’d torture myself with what each doctor or nurse meant when they said what they said, what each tone of voice meant and each facial expression. It was stressful and there were lots of them to figure out too. All with different personalities and different ways of delivering information, and some of them (with their personal and unique methods of delivery) were terrifying.  

In life in general you can have an identical scenario, but it will play out differently depending on the participants, the information provider, and the recipient of the information. There are so many factors that will determine how we see a person and how we feel around them and how a situation plays out … the time of day, the experiences that occur immediately before you speak and first impressions, for example, but the thing it all boils down to is chemistry, or lack thereof, and there’s not very much anyone can do about that (I will add that time is a gift, it allows you to work people out and in the case of doctors and nurses with whom you go on to spend a great deal of time, you eventually learn when it is you really need to worry regarding the information they provide).  But in those early days you don’t have that gift and by nature of Edie’s situation, there was always cause for great concern because hers was undoubtedly a very serious, fragile situation.   

Before I go on, I’d like to point out that the doctors, nurse practitioners and nurses that we encountered regularly were highly professional, excellent at their jobs, and were people that we liked and had a great deal of respect for.   

In the very early days, there was a registrar I avoided like the plague.  I liked him as a person, he seemed great, and when Edie started to get a bit better and I’d gotten used to his manner and personality, I enjoyed chatting with him. I could tell he was a great registrar too. My avoiding him in the beginning had nothing to do with his technical skills as a doctor. In fact, I felt happy when I knew he was taking care of Edie, I just didn’t want him to be the one talking to me about her and her situation.   

There was a particular shining moment for him that I remember, when Edie’s ventilator tube became dislodged, just from a simple change of head position. Almost instantly Edie couldn’t get the oxygen she needed, and she began deteriorating rapidly. She couldn’t breathe and her monitor screamed, and all the numbers displayed on it began dropping quickly. Her incubator was suddenly surrounded by nurses, and I remember one of the sister’s calling over to him for help. Edie had turned blue. The registrar was in the middle of carrying out a procedure on one of the other babies. I can recall Dave’s face; it winced as though he was in physical pain, and he frantically paced back and forth, rubbing his hands vigorously through his hair as the help they were giving her wasn’t working and as her sats continued to drop getting closer to 0.

The nurses quickly asked us to leave the unit because the situation was distressing. It looked like she was dying, right before us, and there was nothing we could do to help.  We sat outside the ward not knowing what was going on inside it, having no control, and feeling it. We didn’t know whether the registrar would be able to stabilise her, all we could do was wait … but he did. All involved did. I remember a few of the nurses coming out to see us after she had been stabilised because they knew what we had just witnessed was traumatic. It’s something they deal with a lot, but they know that for a parent it’d be terrifying.   

“Only panic when you see us panic,” was something said to us by a nurse at the beginning of Edie’s stay. Well, they seemed panicked to us. I remember one of them saying to me out in the corridor, “go home and pour yourself a glass of wine. You deserve it.” I knew the registrar was good at his job; I thanked God for him that he stabilised Edie, but his bedside manner took a bit of time for me to get used to.   

It didn’t meet with my very specific set of natural needs and wants. Needs and wants that I didn’t know I needed or wanted, until I didn’t get them. I guess it didn’t mesh with my natural way, with who I was during that particular period in my life. I can clearly recall my regular whisper to Dave, every time I saw the registrar walking in our direction, “oh shit, he’s coming. I’m going to the expressing room”, and I’d run away.   

In his defence, he was the registrar to mostly deal with us in those early days when there was a lot of bad news to be broken, but it wasn’t about him being the bearer of bad news, it was about the way he broke it.   

He was very direct; so blunt; and with seemingly no ability to sugar coat anything (sometimes there’s room for a little sprinkle of sugar). He also came across as very blasé about things. His voice was quite monotone, and he’d twist the swivel chair from side to side when talking to us, and I found it very unsettling. And even though I knew deep down that that had to just be the way he came across, and that there was no way he could have really felt blasé about any of this, it frightened me.   

I don’t really know why it frightened me; you’d think it would have upset me; but no, it used to scare me. I remember escaping a conversation with him, leaving Dave alone to speak with him (Dave found dealing with him fine. As I said before, we’re all different) to go to the expressing room.   

When I got there another mum who I had befriended was already in there, having done the same. I told her why I was in there and she said, “oh God yeah, I know who you’re talking about and that’s why I’m in here now. I only expressed 20 minutes ago. Look,” she said, holding up two bottles with about 2 drops of milk in them. “We call him doctor doom,” she said, and we both suddenly found ourselves in fits of laughter.  It was one of those moments where our respective situations felt so surreal, where we were on the brink of insanity, and all we could do was laugh. We were hysterical. We knew he was a good doctor but his delivery … well that wasn’t for us. At least not during that stage in our journeys, or not until we got to know him and his ways much better.   

I remember around day 2 of our journey, walking into the NICU to find him and a couple of nurses surrounding Edie’s incubator. I could see Edie’s nurse explaining something to him and fiddling with her UVC (Umbilical Venous Catheter) line that went into Edie’s umbilicus, providing fluids and medication.   

The nurse kept fiddling with the line, moving it from side to side, and it made me wince. It wasn’t very nice to see, and I wondered if Edie found it uncomfortable. The nurse, who was perhaps more tuned in to her surroundings, realised that I must be wondering what was going on and explained that there was water on Edie’s belly, surrounding the tube.   

They didn’t know if it had dropped from the roof of her incubator onto her stomach (she lay in 95% humidity in what was essentially a little box of steam) or whether the tube had moved position and was no longer positioned correctly. She explained that they were going to flush saline through the tube to see whether it leaked out onto her stomach while they were watching. If it did, that would mean the tube wasn’t in properly and that Edie wasn’t receiving all that they were administering through it at that point in time.   

Instantly I panicked and pins and needles rushed all through my body, from head to toe. The thought of our tiny and completely fragile and weak child not receiving what they were giving her, what she needed, made it difficult to breathe.   

They flushed the saline through, and it leaked out onto her stomach. “Yeah, it’s not in right”, I could hear her say. They knew I was hovering behind them and so the doctor turned to me and said, “so yeah … the tube has dislodged, so we’re going to have to take it out.” To which I replied, “Ok, but can you put another one in?” “No.” he said. And he just left it at that.   

I thought I was going to hit the floor. In fact, I had to sit down. There I was, being told that this was the tube giving her all her medication and fluids, that it was going to have to come out, and that it couldn’t be put back in. I genuinely believed that that was the end of Edie. That it was game over. It sounds crazy now to think I didn’t realise that no one on the planet would ever deliver news of her end in that manner but when you’re completely emotionally, physically, and mentally exhausted, you lose common sense. And in my defence, since my hospital admission we had been continuously told that her survival was highly unlikely. So, I assumed that because they’d made that clear to us, that he thought it ok to simply tell us it was the end of the road for Edie, without further explanation.   

He didn’t think to say, “no we can’t” or “we won’t put another one of these lines into her stomach, but we can do this or that instead.” It didn’t occur to him that more words would be necessary. That’s what I mean when I say “blunt”.   

I laugh about this now. Now that all is well, I find his bluntness and the stress it caused me, amusing. I also laugh at how my frazzled brain had lost all common sense for a while and laugh at the often surrealness of the NICU environment.  But I’m lucky I can do that.  

As the weeks went on, things became a little calmer and this registrar would kind of hang around by me and Dave during the quieter moments. We’d be there well into the night and even though alarms would still ring, the NICU was quieter because there weren’t so many parents around. I’d gotten used to his manner by this point, so even if he had delivered a piece of information in a way that would have horrified me in the beginning, I had gotten to know him enough to know how to receive it and to know whether I should worry (too much) or not. I liked him. I’d stopped running in the other direction.   

He often enquired about what Dave was reading. Dave was reading a book about David Lloyd George, the first and only Welsh Prime Minister of the UK (to this point), and the registrar didn’t know who he was. So, they chatted about that. His swinging on the chair had gone from terrifying me to making me feel relaxed. Isn’t that strange? He asked what Dave did for work, and they’d chat about that too.   

I remember finding out it was his last shift at NICU, and it made me sad. I didn’t approach him to say thank you. I pretended I didn’t know. As I’ve said before I don’t do sentimentality very well and especially not during a situation like this where I was at risk of becoming a blubbering mess.  But in hindsight, I do wish I had gone over to him and said, “I hear it’s your last day here and I want to say a big thank you for looking after Edie; for giving her your best. We won’t forget you.”   

But I didn’t and I regret that now.   

Instead, we left. On our way out I turned back to look at him and he too was looking at us, swivelling the chair, calm and relaxed (all the babies were calm), next to Edie’s incubator, where we parted ways. I smiled and turned around again and walked through the door. I don’t know where he is now but I’m sure he’s excelling in his career, and I hope he’s happy and well.

To be continued …