Waiting for the Fontan

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.

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Baby Boy and his Big Bro

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.

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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

dory

Helen Calvert
@heartmummy
October 2016

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8 thoughts on “Waiting for the Fontan

  1. Lovely blog. I’m sure it will be a big help to others. Wishing David and the family many more wins. So impressed at how you’ve discussed this with the children and prepared them well in advance, really impressive – so important to talk. x

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  2. The analogy of being in the water with big waves is such a good one – as is the reminder to just keep swimming. That’s all we can do really – but it helps to know there are small buoys in the water to help keep us afloat when it all feels too much! I can so relate to your feelings of anxiety now that you know the Fontan is in the not-too-distant future. We thought Jessica’s Fontan might take place before she started school and I spent most of this year with the fear of it hanging over me, until Jessica had her cardiac catheter and the team decided that there was no urgency and the plan was to wait another year or two. We were in hospital with four other HLHS babies, all a similar age to Jessica and the first of these is having her Fontan next week so it feels like the next “wave” of surgeries is getting increasingly close. Hope all will go well when David has his Fontan and that you can enjoy the time with him in the run-up to it without it being too overshadowed by the anxiety of what is to come. Thank you for sharing with #hearttoheartlinky

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  3. colette palin says:

    Helen , your blog is simply amazing, the analogies re the small bouys made me fill up, nothing I think to say can convey what I want to say to you,
    keep strong? what if you dont want to?
    what a stressful situation – you might want positivity
    Davis is a strong little boy – you know that , might not stop you being scared
    no words from me are adequate
    so i guess I can only thank you for your courage and eloquence in your blog and tell you reading your words touches me and reminds me of the psychology behind mothering with challenges when I visit mothers with poorly babies – thank you xxx

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  4. I thought 2016 would be our year where we could afford to make plans, especially since Martha only had open heart surgery in October 2015. When they told us in February 2016 that she would probably need surgery again before the end of the year it really threw us…and it hit Mark harder than me this time for some reason.
    We’ve had a family holiday to Center Parcs and we’ve had lots of family days out. But I’ve made peace with the fact that we will always live in three month blocks (only able to plan our lives in between each 3 month outpatients appointment)
    Sometimes i find myself thinking “but you knew life would be like this when you decided to continue with the pregnancy”…but I didn’t believe she’d survive the 1st operation. That we are now a few days away from Open Heart Surgery #5 is amazing.
    Like you – I will also keep swimming.
    #heart2heart

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