Ninety-One Days of Somebody Else's Hands

My daughter was born at twenty-nine weeks. She spent ninety-one days in the NICU. I counted them, obviously. Everyone counts them.

She is four now and she is loud and she is fine. This is not a sad story. I want to say that at the top, because I know some people reading this will be on day nine of their own version and will need to know how it ends.

The first thing

The first thing is that she was not mine.

I do not mean that in a mystical way. I mean it practically. She was in a box, attached to things I could not name, being looked after with enormous skill by people who knew precisely what they were doing. And the one qualification I had — I am her mother — turned out to be, in that room, completely useless.

Other people fed her. Other people changed her. Other people knew what her numbers meant, and could tell the difference between an alarm that mattered and an alarm that was a probe slipping, which I could not do for weeks and which meant that for weeks every single beep put my heart through the ceiling.

I sat next to my own baby and asked permission to touch her.

I do not think anyone realises how strange it is to become a mother and be, at the same moment, the least qualified person in your child's life.

The middle bit

Everybody warns you about the beginning. Nobody warns you about the middle.

The beginning has adrenaline in it. Things happen, decisions get made, you are running on something. Then around week four she was stable and progressing and nothing was going to happen today, or tomorrow, or probably next week either, and I had to drive forty minutes to sit beside a box for nine hours and then drive home.

That is when I came apart. Not during the crisis. During the part where everything was going well.

I stopped being able to answer people who asked how she was doing, because the honest answer was "the same", and after six weeks of "the same" people run out of things to say and so do you.

I also stopped going home properly, and I will be honest that I was not fully rational about this. I had got it into my head that she knew when I was there. Probably she did not. But the thought of her being frightened at three in the morning with nobody there who belonged to her was not something I could hold in my head and also sleep.

What people did that helped

Some of this was small and some of it changed everything.

A nurse taught me mouth care. I cannot tell you what this did for me. It was a tiny job — a bit of cotton, her lips, a few times a day — and it was mine. I was not allowed to do her feeds or her medication and I understood why. But this one thing I did, and I did it better than anyone, and it meant that when I walked onto that unit I was walking in to do something rather than to watch.

If you work in a unit like that: find the parents a job. Any job. It is the difference between being a visitor and being her mother.

One doctor told me the middle would be awful. She said it in week two, before it happened. She said: around week four you will feel like nothing is happening and you will find that harder than this week, and that is normal and it does not mean anything has gone wrong. When week four came and I felt exactly that, I had a shelf to put it on. I have thought about that conversation a lot since. It cost her about thirty seconds and it saved me weeks of thinking I was failing.

Somebody told me to go home. Properly told me. Not "you should get some rest" — I had heard that a hundred times and I had filed it under things people say. She sat down, which nobody did, and she said: she is being watched by people who are awake, we will ring you, and you sleeping is part of her care. I went home that night and slept nine hours and cried in the morning out of sheer relief.

What people did that did not help

I hesitate to write this part because everyone was doing their best and most of them were wonderful.

Being told I was amazing for never leaving. I know it was meant as a kindness. But I was not coping well, I was coping badly in a way that looked like devotion, and every time someone praised me for it, it got slightly harder to stop.

The other one is the changing faces. Different doctor, different way of explaining, different emphasis. Nobody was contradicting anyone — I understand that now. But when you are holding on by your fingernails and you have memorised yesterday's version of events, a new person framing it differently feels like the ground moving.

Where we are

Ninety-one days. Then home, with a monitor for a while, and then without one, which was its own private terror that lasted about a fortnight and that nobody had mentioned at all.

She is four. She does not know any of this happened. She has no idea that there was a period when her mother had to ask permission to put a hand on her.

If you are on day nine: the middle is the hard part, not the beginning. Find one job that is yours. And go home and sleep, because nobody is going to be able to make you, and you need to be standing up at the end of this.

My own story, shared with my husband's agreement. I have not named the hospital, the unit or any of the staff, and my daughter will get to decide for herself one day how much of this she wants attached to her name — which is why neither of us is named here.