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.


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