Our little lad needs more open heart surgery next year. We have always known this to be the case. He has Hypoplastic Left Heart Syndrome, the left side of his heart doesn’t work. The surgical pathway is a 3-stage process: operation 1 as a newborn (David had his “Norwood” procedure at 5 days old); operation 2 as a baby (David had his “Glenn” procedure at 5 months old); operation 3 as a preschooler, usually between the ages of 3 and 5. David turned 3 last month.
At his last cardiac clinic back in the summer his cardiologist confirmed that his third stage operation, the “Fontan” procedure, is likely to take place in summer 2017. He will be the right age, and it will get it over and done with before he starts school nursery. I was really happy to hear this. We had been thinking that summer 2017 would be a likely time, and it was nice to have this confirmed. We had planned holidays for this year and I had been working on a conference, thinking that this year we could afford to plan, and then next year we would keep things fluid, in anticipation of surgery. So it was good to have this confirmed as “the plan”.
His cardiologist explained that David will need a brief heart catheter procedure before the big op, to check “his levels” (whatever that means) and to make sure they know exactly what is going on in there before the Fontan. A friend of mine explained that this is usually a 2 hour procedure, assuming everything is straightforward. It’s pretty non-invasive too, it’s sort of keyhole (is my understanding) rather than the big “open ’em up” jobs we’re used to. So that was fine. A heart catheter procedure and then on to the next big one. Right. Sorted.
And then something changed. We started to tell people that David’s next big operation would be next summer. Almost definitely. We started to think about that in all seriousness. We made a photo book for David showing him pictures of his first 6 months, what he looked like intubated, his scar and so on, because of course he is the only one in our family who doesn’t know what he’s been through! We talked to his older brother about how this time around we will all stay together as a family, we will all go to Alder Hey together (taking Edward out of school if necessary, which his school is quite happy with). It may sound strange to some people that a) we talk about these things in advance and b) we talk about them to 3 and 5 year olds, but that’s what works for our family and our children.
We knew we were going to be entering a stressful time. The run up to his Glenn had been so incredibly hard on us as a family and on Phil and I as a couple. We know we’re facing it again. I started to feel anxious, not about the operation, but just generally. Heightened anxiety. I knew why. My husband has started to struggle with anxiety, as unlike me he has never had the chance to write about, blog about, speak about and talk about our experiences. He has needed some support.
And then an acquaintance posted on Facebook that her daughter was having her Fontan procedure. And it threw me a bit. And I mentioned this to a friend, who reminded me I don’t need to “worry” about David’s until it happens. And I struggled to explain that I wasn’t worried as such. That’s not how it is. And then I was suddenly able to articulate what is going on:
It’s like stepping into the sea. And then you’re swimming. And you’ll keep swimming until you reach the shore. Things like today are big waves. One day we’ll swim through the storm. And we’ll get to a shore. We’re swimming now, we can’t go back to the beach we’ve been on for a couple of years. We don’t know what new shore we’ll get to. But we just have to keep swimming. We’re in the water now.
You know you have the right friends when they instantly get what you are blathering on about…. The wonderful woman replied with:
There are many small buoys in your ocean…. to keep you afloat…. you touch them for a moment as you pass…. it gives you a brief respite…. the strength to keep swimming… You prepared well… xx
Many small buoys in the shape of amazing friends and family, and all of the good times we share. And two small boys who make me laugh every single day. David is a force of nature, always has been, born pink and screaming when he was predicted to be blue and listless. Hasn’t stopped making his presence felt ever since.
So we’re in it now. And there’s no turning back, and it’s going to be a long swim, and there are so many unknowns. But when David was born Phil and I agreed that we would take every good moment as a win and that was that. That was in the days when we thought we might only have him with us for around five days. Three years on and we have bucketsful of wins. So in the immortal words of Dory, all we have to do is