Challenge

For the first few days in the NICU I felt comfort and safety in the knowledge that little happened, but upon reflection I realise I didn’t really understand much of what was actually going on. It was naive of me to expect that a baby born, by the Tommy’s definition, ‘extremely preterm’ would have a smooth admission ride with no issues even if that was what I desperately hoped for. I felt that, since he had survived the birth, that was it, he’d made it and now we could watch and wait. An agonising wait it seemed, to get to the point when you felt out of danger, an agonising wait for the something bad to happen. Continually you searched for a conversation with a doctor where they might give you an encouraging smile and assure you that they were not experiencing any problems, but in your desperation you forgot that it was already a problem that he had been born at 24 weeks and there was no possible way any doctor could give you any assurances. Before each post I write I put together relevant sections of Finn’s various discharge summaries and the journal I kept in the first few weeks of his life. When Finn was born, understandably nobody knew how to respond- do you buy a ‘congratulations’, ‘yay’ ‘new baby’ card for a baby the parents might lose? Do you buy a Jellycat bunny or a baby grow or a blanket, or a Diptique candle to offer a tranquil accompaniment to the grieving process, or their rare moments of rest? Or do you, sadly, do nothing? A very dear friend bought me a journal, to write down the daily events, our thoughts and feelings and it was the best idea because it kept me focused- channelling my thoughts through words on a page it gave me something to do every day and something that in the future, like now, I would be able to look back on and read with a renewed mindset and sense of clarity.

Each day the Consultant in charge and his or her entourage performed a ward round. That is, the entire team would visit the cot side of each baby, review and discuss their ongoing care and make a plan for the day. This became our routine, every morning we arrived in time for the ward round having already been to see Finn and scrupulously read every note on his chart. We questioned, and probed, listened and nodded and clung to every word before resuming our day- hands through incubator windows, reading children’s stories, trips three hourly to the expressing room.

To facilitate healthy growth, the job of the team after birth is to challenge your baby. One of the biggest challenges that the team and your baby faces is to breath on one’s own. This process is called extubation (removing the tube), that is, getting your child off the ventilator. You are in a window of comfort with the reliance upon the ventilator, you see your baby’s chest rising and falling and it gives you a warm feeling of normality, the numbers on the screen tell you his sats are good and his resp. rate is normal. But his sats are artificially maintained and the resp. rate isn’t his- it’s the machine. The doctors attempted and failed to extubate Finn 3 times in the first few days of life. I was consoled by the Consultant with the statement it is very difficult to extubate a baby weighing less than a kilo, but the experiences were horrifically upsetting. You wish nothing more than for the extubation to be successful, for you to see your baby’s face without a tube down their throat or up their nose, the removal of each piece of equipment being a step towards normal, the replacement of one thing with another less invasive- progress.

I remember very vividly one specific attempt, a fantastic doctor at UCLH made the decision to extubate, we stood watching as Finn’s sat levels, heart, and respiratory rate started, slowly, to drop, his little abdomen inflating and falling like a weak thin-skinned balloon, his ribs all too visible beneath the surface. She used her index finger to administer chest compressions, the nurse, standing beside her asked with a detectable hint of panic, ‘Do we need more people?’ before pulling the emergency cord for the tube to be put back in place. Failure. Naturally, I was rather hysterical at this point- watching your baby fading before you, desperately but hopelessly clinging onto life was not what I would choose to happen. The doctor who attempted the extubation asked me very directly- what exactly I was upset about? It might sound abrupt and perhaps cold of her but the intention behind it was warm and the conversation that followed actually kickstarted the mindset I would be forced to adopt moving forwards. I told her it was the not knowing, the complete helplessness. She told me that I would have to find the strength to put those feelings to the side because it was impossible to predict an outcome but you have to know what you should and shouldn’t get upset about because what had just happened in that room, it was not bad.  Aside from the obvious, bad would be discovering your baby had had a catastrophic brain bleed, bad would be severe sepsis, bad would be never getting off the ventilator, spending years in hospital and then perhaps, maybe, going home with a child with a tracheotomy. All were possible. She said that so far Finn had done very well, his cranial ultrasounds (brain scans) were normal (although he could still develop a bleed), he was not off the ventilator but then he still weighed far less than 1 kilo…but what we had to hope he did not get, was NEC. Necrotising Enterocolitis is the baby killer.  Quite simply, it is a severe, often fatal infection where the intestines start, inexplicably, to die. Finn got it. This was not, however, until much later when he was around 6 or 7 weeks old so we will get to that. So what the doctor meant was, Finn had many, many challenges to overcome and he was all alone in facing them. I couldn’t collapse into myself, in a pit of despair and hopelessness, we had to just be there, and watch and keep on moving, because whatever was happening for us, it was far, far worse for Finn.

On days less dramatic, to put into perspective how painstakingly slow each day could be, and how delicate these tiny babies are, it was a big deal for us at 2 weeks old for Finn’s feeds to have increased from 1ml- yes 1ml of breast milk through his tube every 4 hours, to 4ml every 2 hours to help him gain weight. It wasn’t until Finn was stable enough at 7 days old that I was finally able to hold him. Skin to skin (Kangaroo Care) is a huge part of preterm care and its benefits are amazing; helping a baby to regulate their body temperature, nurturing the bond between mother and baby, stimulating milk production, pain and stress relief, transfer of good bacteria, improvement in heart and lung function and regulation of blood sugar. It is an amazing experience, it took 4 nurses to manage safely to lift Finn from the incubator, along with all of his equipment and tubes and place him against my chest and then cover him in multiple blankets before keeping an eye on the equipment to ensure he remained stable. Once I held Finn, to maximise the benefits of skin to skin and minimise disruption I would hold him for 2 to 3 hours at a time, simply lay back, with him on my chest- I was elated at the time, sadly though, I could not feel the weight of him against me, only the pressure of the tubing that seemed to just hold him together- skin as fragile as gossamer, skull soft and malleable, his breath not even a whisper.

 

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