Right back at the start I talked about the idea that when you’re unwell you go to hospital, you get better, they discharge you and you go home and live your life.
And I remember saying that’s not how it is for these preemies, especially a micro preemie, extremely low birth weight, early gestation.
And so here we are, just over one week at home and I have a chance to reflect on the week, and try to offer a little insight into the world of a nicu family after the nicu.
It should feel easy, after months of driving to the hospital and sitting beside your babies and hoping they keep breathing, to be at home with them, because they are well enough to be at home, they must be healthy right?
There’s a point you come to, after living in the nicu for months, that makes you realise you don’t need your baby to be 100% if it means you can take them home. It took me a while to get there but coming home with this NG tube was us saying to them, we have watched and stood back for long enough, it’s time we were parents.
And we have been parents this last week. Not exactly in the way other people are, but in the best way we can. All we have to go on are recommendations from specialists, and our gut instincts.
We are trying to find a balance of medicalised hospital life and ‘normal’ life. There’s medications to remember and therapy to perform, there’s feeds to draw up, pumps to turn on, input/output to monitor, and that ever present anxiety that your baby is becoming unwell (which never, ever eases). While at the same time there’s the desperate desire to do something normal with your baby, to pram walk, play mat, bath, shower, smile, talk, and a need to sometimes put your child’s distress down to just ‘being a baby’.
The days when you can balance it are good, they are happy and a mixture of sick baby and normal baby that is as normal as possible and as normal as we are going to get. But then you get reminded that the normal we are living is not everyone else’s normal. Our baby isn’t crying because he’s a baby, he’s crying because he’s in pain, because he’s had a tube down his throat for 6 months and the reflux has damaged his insides. He’s not making baby snuffles and grunts because he’s quickly filling his pants, he’s writhing and squirming in pain for hours on end trying to get his immature intestinal system to digest some of this milk that keeps getting forced into him like foie gras. He’s not spilling a little milk because he drank a bit too much, he’s violently gagging it up because the door that’s supposed to hold all that milk in has no muscle tone in it, so it can’t do its job.
It feels like this has been our first week at home, struggling to keep milk in his tummy, struggling to comfort him when he screams and struggling to balance the normal.
But I think we have given it our best shot and that week two can only offer a new opportunity to balance it better.
One thing we do know is that we couldn’t have focused the way we have without you all respecting our wishes to be alone. Thank you. For understanding that we needed this time. For understanding that this isn’t over for us. And for continuing to understand, as we head into week two and still might not invite you over.