April 19


It’s been a big week. You have been ventilated for 6 days and are recovering surprisingly well. Just this morning I rang to get my usual 6.30am status update and the nurse tells me you are doing much better. Your oxygen is down to 40% and you are stabilised. You are ready to come off the ventilator. Just under a week ago I left you, unable to contain my terror, looking yellow and tired and so very unwell. I suppose I will reflect on that at some time in the future.

Maybe I should have stayed with you that day despite myself. I’m not sure how I will feel about leaving you here in days or years to come, but for right now there is plenty to feel guilty about and I must brush it off. I suppose the only reason I can give you is that I didn’t want to be your anchor. It was hard to leave, but I knew that everything in the NICU is coloured by a finely tuned balance. As I sit with you sometimes I can scarcely breathe in case I disturb it. That day I was terrified and as ridiculous as it may seem I did not want that energy to hold back your fight. So I left early, possibly dismissing the danger you were in on a superficial level. I told myself you were better off. I knew with each beep, each alarm, watching you be intubated – I knew you needed only strength and it was within you. As the day wore on and I distracted myself with inanity the fear grew and the depths of sheer dread I was feeling became clear.

I suspect I will always feel like I failed you that day, but this is a marathon we are running and there will come a time when you will need me to be a reserve of power. I am steeled for the fight now.

Nurse Esther has stayed with you for much of the time you have been so gravely ill. She has pulled double shifts to be here with you when you were most in need, she has sung you Chinese lullabies, (I have never heard her singing voice, but the other nurses tell me it is quite something. They say it with a smile, so I’m not sure if they are serious). Her persistence is matched only by yours, and together with Dr Hanumesh they have pulled you back from the brink. I have visited every day and watched your intense struggle. We still don’t know what the infection is, but somehow you are beating it. Beating the odds. Again.

Today will be another day that I watch you from the outside, not able to touch or hold you. The upside to this is that without the CPAP machine I can see your beautiful face. It’s so rare I can see you, so rare I am afforded the opportunity to look into your beautiful eyes. It’s something. A small something, but it gets me through. You have been through 3 ventilators and increasingly levels of oxygen. Finally, a couple of days ago, you were on the most potent ventilator, (the rescue ventilator, which makes your tiny chest vibrate visibly), on the higest level with your oxygen requirements at 100%. Nurse Tess held you and talked to you gently. For a moment you saturated at 40% and our hearts were in our mouths. It was 9pm and the ward was quiet, except for the palpable fear each of us felt as we stared at your monitor. “Come on Lucy. There’s nothing more I can do. Come on. It’s all up to you.” She said gently.

I was too terrified to speak. I was too scared to breathe.

Slowly, it seemed, though this is barely three days ago, you recovered. Beep by beep, percentage point by percentage point. Your numbers looked better on the cap gas, (the small heel prick you have daily to check your carbon and oxygen levels in your blood as well as that pesky CRP number that showed us how very sick you were). You came off the rescue ventilator and onto a gentler one. Like a balloon gradually releasing air, your oxygen requirements dropped and you stepped back down to the gentlest ventilator on the lowest setting. As you breathed easier, so did we.

Today I lose my view through the tiny arm holes in the humidicrib to your perfect little face. You will very soon be encumbered with a face mask and strapping tape and nose cannulas. At first we will hold our breath again – coming off ventilation is a very big step – but I know you will be okay. No voice needs to reassure me. I feel as though we have come down the other side of the rollercoaster and I can rest for a second before preparing myself for the next huge hill.


You’ve had croup for the last two nights and it makes me uneasy. I have seen your doctor and have a management plan in case it escalates. And I was reminded that croup is incredibly common and that kids your age get it all the time – the fact you’ve never had it before is nothing short of a miracle given your history. I forget it sometimes, your history. I forget that we are three years into recovering from the biggest shock and longest six months of all of our lives. I forget that you are not impervious to illness.

Still as you lie next to me in bed at night, (its rare that you feel vulnerable enough to need a cuddle in the middle of the night but when you do I am glad to give it), I listen to you wheeze and it takes me right back to those moments when the world froze in time as our most inner fears were exposed. Those moments when you struggled to breathe. The first few apnoeas. The times when your saturation levels dropped. The day when I could not stay and watch you suffer through the hell you were left in.

I know you are well enough to fight this small battle, but these are sleepless nights none the less. In some hidden part of my memory you will always be the fragile almost-baby who almost didn’t make it. It’s difficult to reconcile that with the confident little creature you have become…except when you struggle once more for breath.

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