It probably sounds totally insane, but the past few weeks (once the initial shock of Maisie’s diagnosis – or probable diagnosis had passed) have been some of the happiest in my life. Not only do I have all that I have ever wanted: a perfect family of four, I also appreciate it more than I ever could have done without her diagnosis. The little things become the big, most important things. Eating toast on the sofa together, watching telly in bed, going on a car journey with the two of them in the back… We’ve also done some amazing, fun things together. Rather than spending time on the dull household chores – we concentrate on Maisie’s bucket list which is full of memory making! We’ve done things we’d never have done in another situation, such as having a picnic on the top of Tregonning Hill with family, making birthday cakes for each month of Maisie, staying in local hotels with the kids – and for the majority of the time, I’ve been able to quell the bittersweet feelings, and just feel happy.
Although, I also think we’ve been in a slight state of denial (partly because everything is so uncertain anyway). Hospital visits had been brief (if not really regular), she has seemed very happy and settled, and in her echos, her heart has been stable.
But a couple of weeks ago, all that came to a head. I brought her into hospital because I was slightly concerned that she had been throwing up quite a lot, her hands and feet became red and cold sometimes, and she seemed increasingly lethargic – only staying awake for 30 mins – 1 hour at a time. Writing that down seems like a scary group of symptoms, but at the time they creep up so slowly, they are barely noticeable – and can mean so many different things for babies. Anyway, unfortunately, it was something (not that we quite know what that is!) She was dehydrated to start with. Her heart can’t tolerate even mild dehydration, so she needed to be put on an IV drip. It’s a scary amount of responsibility – especially as the one breastfeeding her. So along with the pressures of looking after two small children, one of them also needs constant monitoring in terms of how much she is drinking, and how many wet nappies she has (plus her increasing amounts of medication).
It all just hit me – the reality of it all. The fact that she really is very sick, and vulnerable. Sometimes it is all a bit too much. The relentlessness, the physical exhaustion, the fear of the future, the pressure to enjoy the here and now, the responsibility in keeping her well.
Hoping we’d just be in hospital for a few hours – we ended up staying for almost a week. Poor Maisie had to endure multiple blood tests – sometimes late at night when she was fast asleep, urine samples and her OBS taken every four hours. Whilst I had to record each breast feed (hospital staff really don’t understand breastfeeding…), and keep each nappy to measure input and output. All of this stuff has become pretty normal after several hospital stays, but it all became a bit too much at several points.
Modern medicine is obviously incredible. The NHS is incredible. But sometimes there seems to be no understanding of the basics of recovery: like fresh air and sleep! I completely understand that the staff are far too stretched to time procedures by patients’ nap times, but it doesn’t make it any less frustrating when you have that very second got your baby to sleep (after a difficult few hours) when they suddenly need more bloods/an echo/their temperature taken… Any mum to a baby knows getting any sleep in the night is tough going, imagine adding to that nurses coming in and out of the room every few hours?!
It was also hard being away for Lowen for so long. He and Ben would visit for an hour in the evening, but he would always be tired, and Maisie would often need a feed, and I would just wish I could tear myself in two (just like any parent).
I also found the whole time increasingly disappointing when nothing seemed to be progressing, and it seems so difficult to do any living in hospital. We don’t know how long we will have Maisie for, and I hope to keep hospital visits and procedures to a minimum if we can help it. It’s such a balancing act – trying to keep her well, but also trying to keep her happy, relaxed and still make some memories. But I realise I need to try to let my frustrations go, and when we are in hospital – try to make the most of that time too, and enjoy that time with her – show her the fish in the tank, give her a bath and just keep holding her tight.
Because right now, we are lucky enough to still have her.