Patient B

I couldn’t see him. That’s what jumps out the most in my memory of the first moment I walked into Nursery 1 of Intensive Care at University College Hospital. My eyes flicked frantically between the four incubators in the room, each visually holding a baby except Cot 3, Finn’s cot- I couldn’t see him. I couldn’t see him because he was not what I expected to see, no matter how much I had read in the short days on the labour ward on what to expect. He was so, so small that the wires, the tags, the leads, the ventilator, the fabric covering his eyes obscured almost every part of him. I couldn’t see my baby. His skin was dark brown, translucent. He was covered in the most aggressive dark purple bruising from the trauma of the transverse positioning of his delivery. He was skin and bone, not a baby but a foetus. It probably sounds quite shocking for me to say that, but our first moment of seeing our child was so clinical, not the emotional, desperately happy feeling of having your curled up pink newborn passed into your arms, a full head of hair and his Dad’s nose. You are presented with a mouse-like, half formed, miniature idea of a baby full of so much promise to become the former but with so far to go for it to be realised. The volume of equipment was the most daunting realisation of how we may never get there, the sheer number of beeps and alarms. I don’t know what I really felt, numb I think, I was so in shock I remember I think I walked into the NICU barefoot from my room in the Labour Ward across the hall and I was asked by a nurse to put some shoes on, I could hardly cope with dressing myself let alone formulate an emotional response to a baby that of course I loved unconditionally, but in a way I couldn’t quite feel yet because he was there, but unresponsive, not breathing for himself, eyes still fused closed.

And so ‘What now?’ we asked as the nurses explained the rules of the nursery, the meticulous cleanliness, the visiting hours, the phone number so that we could call to see how he was when we went home each night, painfully,  without him. Finn was ventilated, he was on antibiotics, he’d had a cranial ultrasound to check for brain bleeds, he had cannulas, an Umbilical Arterial Catheter (I’ll refer to a form of one of these in future as a ‘long line’) so that they had another point of access and a way that he could be fed intravenously (yes that’s a thing). He was undergoing phototherapy for bruising and jaundice so his eyes were covered to protect them from the light. The Incubator was closed and set at 100% humidity for the purpose of thermoregulation, fluid and electrolyte management as well as maintaining the integrity of the skin (which, of course, is an organ) still yet not fully formed. He had TC rings stuck to his legs to measure the CO2 percentage in his blood stream and therefore, along with blood gases, help accurately calculate his oxygen requirement to maintain his saturation level. We had no idea of course, at the time, what any of this was or what any of it meant but it became our every day, managing life support, mitigating risk, waiting for him to grow. There was a duality to the sound of the constant beeping of the equipment. On the one hand you were familiar with its sound but a change in pitch or tone or frequency and your stomach tensed once more as the nurses flitted between machines with an uncomfortable casualness- it was their daily routine.

There was a long time when in the gravity of what has happened to us I felt anger in every day even long after Finn came home, but I am starting to feel at peace with what has happened, and take pleasure now, in the everyday, in the ordinary. Ordinariness is a luxury you never realise you have until you’re firmly thrust into the opposite and as Finn turned one corrected last Sunday, he is so happy, so full of energy, thriving, I feel that I am starting to enjoy life again. It’s important to admit to my anger,  I feel, not that I would put myself necessarily in the bracket of having suffered from postnatal depression, but certainly, quite possibly from post-traumatic stress. You see Finn’s ‘NICU journey’ as they call it was not one of the longest but it was, in contrast, one of the most dramatic. To talk timescales, having a baby as early as almost physically possible we were told that term is approximately when most babies tend to go home. Obviously the earlier the baby the further away from term, the longer your hospital stay. For a 24 weeker, if they go home at all, it is far less likely to happen at term because the earlier a baby is born, the higher the risk of complications and sickness. What I didn’t understand at the time was that having a timescale in mind, was both pointless and cruel. With a premature baby you can’t fixate on a home date, you can’t think about the future at all because every day you go into that hospital, you don’t know whether your baby will make it the next few hours, the next few days, because they are so frail, so vulnerable, that their condition can change dramatically in no time at all. I wasn’t angry that it happened to us and not somebody else, there are many far far worse off, but the anger lies, I realise now, in the complete powerlessness. You have no choice but to be strong, to face what is in front of you that day and make decisions to move forward, and wait- read a bed time story through the incubator so that he can hear a familiar voice, cup his miniature body in the palms of your hands through two perspex doors.

It’s not right that days after giving birth, I’d leave our little sanctuary of a garden flat, walk up Hampstead High Street (past a thousand mums and babies), take the lift down and ride those few stops on the Northern Line to Warren Street. I remember sitting opposite a lady who was pregnant, or looking at the sign to give up one’s seat for pregnant ladies or those less able to stand, and having a sudden gut wrenching reminder – I was no longer carrying our baby, I no longer qualified. Worse still was not only the knowledge of my empty womb, my still-raw stitches, the stark normality of a journey on the tube, my engorged breasts (heavy with milk coming in) but my sickeningly empty flat. The complete lack of anything in our home for our child, no sign that we had even had a baby. We had not even got to the point of ordering a Moses basket, or decorating the nursery or discussing names for that fact… and so every lonely evening when we came home together, we came home, together as two, just the same as before, except not the same, a huge gulf lay in the very absence of what should be there with us.

“You got wires, goin’ in
You got wires, comin’ out of your skin
You got tears
Making tracks
I got tears
That are scared of the facts.”  

Athlete  ‘Wires’ 2005

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