Before Freya was born I had hardly visited hospitals. When I was pregnant I remember hoping that we would get discharged the day she was born (or at the latest the day after) so that we could go home and start our lives as a family.
Well, that didn’t go as planned. I am sitting at the HDU bay of the respiratory ward, whilst Freya is snoozling on her play mat. It’s her 10 month birthday and we have been home for grand total of 7 weeks. This time we have been at hospital for 7 weeks. We might be going home in a month and a half. Or we might stay for a bit longer. Any way you look at it this is where we live for the time being.
I have this theory that hospitals are bit like prisons. You have good ones and you have bad ones. We’ve been to a few. So, for example our local hospital is a bit like a Thai prison. Dirty, overcrowded and you are lucky if you get out alive. Whereas the top children’s hospital we are at as I type is a bit like a Norwegian prison; you get bedside entertainment units and regular activities… but you would still rather be at home as, after all, you still are in prison.
So what is it like living in a hospital? It’s stressful. Every time we get transferred from our local to a PICU we have been through the most stressful events of our lives. Frey Frey’s had some dramatic deteriorations at home followed by being bluelighted to hospital. We have sat, helpless, in resus rooms where teams of doctors have fought tirelessly to stabilise her. We have waited for the specialist transport teams to arrive and sat at the backs of ambulances whizzing through London. We have sat by her bedside for countless hours wondering whether she will pull through.
It’s tiring. I tend to do the 10-10 shift. We generally stay in the hospital accommodation to save time (and money) rather than travelling back and forth. It feels weird being at home without our princess – and it gives us comfort knowing that we are minutes away if something happened. Don’t get me wrong, I think it’s amazing that we are offered an opportunity to stay near the hospital, but being in parents’ accommodation is basically like living in the most un-fun student halls known to man. It’s basically designed for sleeping, nothing else. The rooms are basic and the mattresses and duvets are made of plastic; After tossing and turning I wake up every morning tired, with my ass stuck to the bed. You have to share a kitchen and bathrooms. It’s fine for days, even weeks, but after months living away from your home comforts it starts eating you from inside.
It’s unhealthy. There’s nowhere to cook so we live off the hospital canteen, local restaurants and buying readymade crap from the local supermarkets. I try to go home once a week to do a big cooking session, but that means time away from Freya. There are no exercise facilities, though it doesn’t really matter as after spending 12 hours a day in hospital gym would seem like a superhuman effort. It’s stressful, so it’s easy to fuel yourself with caffeine and sugar from morning until night.
It’s expensive. Significantly reduced income combined with constantly eating out and travelling between home and hospital equals unhappy bank balance.
But sometimes it can fun. We’ve made friends with other “long termers” and staff. Like in real prison, us inmates have a lot of times on our hands so Freya (sometimes reluctantly) takes part in various arts and crafts sessions as well as photoshoots. There are hospital parties and all kinds of entertainment for kids. We have a couple of wonderful friends who turn up regularly to take us out to real world to have a bite to eat, to drink a pint or five and who help us detach from the weird hospital universe we live in. As a parent of a sick child you are no one’s priority – not even your own. You soon realise who are your true friends – the ones who are there to help you when you ask, the ones who regularly turn up rain or shine. And that makes a huge difference when you are stuck in a hospital for months and months.
It can also give you a bit of peace of mind. Freya has thrown some serious wobblies at home. Saturations dropping into 20s, heart rates of 70s. It can be scary to be at home. When you have a chronically ill child the feeling that your baby is safe and well looked after is something that can give your ever restless mind a break from worrying. (Unfortunately, it works the other way too – if you are stuck in a hospital you don’t trust you feel anxious even going down to the coffee shop.)
It can teach you to appreciate little things if you let it. Every day you have wonderful moments. Freya hitting baby mile stones. Coming into the ward and finding the nurses playing with happy babies. Or those lovely quiet moments in the afternoon when the babies at the bay sleep at the same time. Being allowed out for walks as a family. Sharing our story with parents going through the same. Hearing theirs. Drinking very very large cups of coffee. Knowing that there is a chance we will only have shorter time with our little princess than most parents get with their children makes us appreciate what we have at this very moment intensely. And that makes this bizarre hospital life worth it million times over the disadvantages and inconveniences.
Don’t forget to follow Freya’s day-to-day adventures on facebook “Team Freya” and Instagram “team_freya”. I’m on twitter too @elnupps.