I remember in the midst of when Albie was a baby, and he had his NG tube in, and his sweats, and his medications, and his physical therapy and his weigh-ins and his looming open heart surgery – yeah, back then – another, more experienced, heart mum emailed me. She had been reading the blog and wanted to let me know that we would get through it, that things would get easier. She had a child who was nearly school-age with a heart defect. Her child had surgery, and would need surgery again too, but not for quite some time.
She told me a little about their life. About their child’s energy, her progress at kindergarten. She included a photo of a very bright-eyed, very happy, girl. I remember reading her words that, “….there are many days now where we simply forget she is anything other than healthy.”
I remember wanting to appreciate her words then but feeling a little bit alienated by them – that forgetting about Albie’s heart defect wasn’t going to happen for us, for any moment, at any time. And as much as I wanted to believe it to be true – I just couldn’t see that far ahead. It seemed a very fabled land where she was living.
You can see where this is going. We did get to that place. I think we started to get there sometime in the summer before Fred arrived. Full days would pass when I didn’t consciously think of Albie’s heart. And then I would catch my mind, and go “Wow. You’ve not thought about his heart for a while.” And slowly and unevenly, through this English summer and autumn, I have begun trusting a lot more that we have him for keeps and worrying a lot less about what we might yet lose.
I’ve written before, about how important it is to just be present, but I think until pretty recently I was convincing myself of this as much as you. None of the statistics have changed, but as the hospital days turn into specks in our family’s rear view mirror, my worry about what is next for Albert has diminished.
That is, of course, until cardiology appointments come piling through the door. ECG.Boom. Echo. Boom. Cardiologist. Boom. And as the appointments got closer, a little bit of worry crept in. He has been sweaty. His hands do run cold. He does get tired. Perhaps we will go there and they will find his valve narrowing or calcified or something and he will need more surgery right then and there. They might find out his heart is actually failing even though he has had no symptoms. Can that happen? Maybe that can happen? What if…You never know…
I think the internal chatter is a protective mechanism. Actually scrap that. I KNOW it is protective. There ain’t no way I ever want to get caught out as badly as I did when Albie was born, and that is what my head chatter is all about. If I can imagine it first, you see, than it won’t be such a shock if any of these scenarios actually happened. Or something like that.
It is a completely emotionally exhausting state to exist in though, so I was glad for last Tuesday when we tripped over to Alder Hey Children’s Hospital in Liverpool to finally find out.
It is interesting as Albie grows, how he interacts with the doctors and technicians. When he was younger, it was all about distraction. But now, knowledge is everything. The more he knows about what to expect, the happier he is. We watched these instructional videos (here, here and here) made by Royal Melbourne Childrens Hospital explaining what will happen. I’d recommend them should you need them as they really helped to take any nerves away. Albie had learnt it was very important to lie still for the ECG to work so he did his very best job of freezing like a statue.
He was incredible getting an echo done too. I was worried he would squirm and wiggle but he was just fabulous – interested in the probe and his heart on the screen. Very still and interested the whole time.
And the news of it all?
Boy, did I take a country road to get to the verdict! Sorry about that people…
His heart is absolutely, and utterly wonderful.
As with last year, the cardiologist said his heart repair looks ‘perfect.’ There is no calcification or narrowing of the pulmonary valve or artery that they replaced. There is no valve regurgitation either. In fact, for all intents and purposes, at the moment, his heart function is totally normal.
We, of course, asked for a timeframe on how long we can expect this to last. Unsurprisingly, we are in a bit of a ‘how long is a piece of string?’ situation. But, even with some cautious doctor heeming and hawing she said, if nothing changed suddenly, Albie will be at least 6 years old before he needs more heart surgery. It feels like a long way off.
The plan is to see him six monthly for a while, and then switch to yearly appointments if there are no marked changes.
The weight off my mind and our shoulders was instant. Marcus and I did high fives – first with Albie, then the surprised cardiologist. We grinned like Cheshire Cats and chuckled like fools. All that “mental preparation” I was talking about earlier (lets just call it anxiety shall we?), was nothing more than catastrophising.
Our Albie is fine and well.
And I remember that mother’s email to me.
It is my turn to write that message to new cardiac mums:
It gets easier. There are many days now where we simply forget he is anything other than healthy.