Our King of Hearts – Part Two (The Big One)
If you have just joined me, this post will seem a bit, well random. You need to read here first. If you want some colourful photos, check out almost every other post I have. This one is black and white, baby. (Colour is back soon!)
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Dash’s weight gradually climbed. He still slept like a bird and woke at the slightest noise. You couldn’t brush your teeth in the bathroom next to his room without disturbing him. Seriously. But he grew. Indeed, with his hidden feeding tube, and a pram strategically set up with his feeding pump, we went out and he looked positively looked plump and normal. I had to physically remove old ladies from peering at him at point-blank range in admiration as we traverses the shopping centre. They meant well I know, but we could not afford germs or colds or infections. I was the ultimate protective lioness mother.
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When he was nine months of age, we returned to the hospital for a catheter procedure (where a tiny tube with camera in place is inserted into a groin artery and threaded up into the heart). It showed Dash had grown enough to make his PA band tight. This in turn signalled the time for his cardiac repairs – repairs that now included fixing newly discovered holes in the top half of his heart (ASDs). It was a matter of waiting until the surgeons had an appropriate opening in their schedules for him. Every day was like a month. Each time the phone rang, I held my breath.
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We finally got the call when Dash was 10 months old – I was driving out of the carpark of a shopping centre. You know how you remember where you were when Princess Di died? Well, I have the same clarity of the moment etched in my memory for this phone call. As I approached those traffic lights, my world stood still. Suddenly the day we had anticipated (and dreaded) for 8 months was here.
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We had just two days to prepare ourselves, make the frenzied phone calls to gather family support, and do the special little things we felt important. We visited a pet shop with a wall full of aquariums – Dash had really responded well to the two goldfish (called Wallace and Grommet) in the Children’s Ward at the heart hospital and he barely blinked with wonder at seeing hundreds of fish as we slowly wheeled him through the shop.
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Many photos were taken in these two days – we didn’t ever let ourselves think we would lose him, but I somehow needed as much evidence as I could gather of his very special place in our lives.
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We handed our gorgeous little man over to Dr P with mixed feelings – both confidence in staff and terror at the possibilities battled for supremacy. I cannot really recall the hours that followed – we were in some sort of limbo, wondering, praying, not wanting to go too far from the featureless waiting room in case our call came.
Five hours later, we stood beside his ICU cot watching every monitor like hawks and stroking his still little hands. Dash’s first surgery had prepared us a little – the stapled wound, the million tubes, the monitors, the stillness, the waiting and the watching. Nothing makes that particular vigil any easier, although Nurse Vince was fabulous and very patient with our endless questions.
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Each step was cautiously celebrated – the extubation, each line out, the weaning off drugs. To our relief Dash improved quickly and was back in the High Dependency Unit within 24 hours.
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Despite an initial fever, Dash made it home in a week – incredible really considering the seriousness of his surgery. And while Dr P warned that our son still had some residual holes, it as if someone had turned a light on in him. Within days, he was eating almost normally – hungry and letting us know about it! For many months, and even now, five years later, just seeing him demand food brings (happy) tears to my eyes. All the projectile vomiting, the gray pallor, the lack of energy and indifferent attitude were soon bad memories. We would pinch ourselves to make sure our “normal” mealtimes were real and not fantasy.
Watching him play with Coz, our patient, loving, gentle Dane would bring endless hours of delight. Watching him take his first ride on a horse, his first fall off a bike.
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While Dash’s heart condition taught us to never assume everything is OK or under our total control, we get a huge kick out of every little milestone he achieves. For many months, just visiting the shops (without the added baggage of pumps and tubes) was sheer joy. Seeing people admire our little man’s fat cheeks – oblivious to his “big zipper” scar hidden under his shirt – made our hearts swell with pride. Little did they know just how hard earned those rosy cheeks had been!
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Our gratitude to our support crew and the medical staff who cared for Dash is enormous. Our little hero was been given his chance and we have done our best to make sure he follows Dr P’s message, succinctly scrawled on the scruffy signature bear: “Go for your life“.
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We met many friends during our heart odyssey – parents who have been thrown much worse challenges, and faced heart-breaking decisions, little ones who have put us all to shame with their amazing ability to forge through the pain and get stuck back into life with gusto. Some parents have lost their little champions; others faced up to 14 surgeries with little hope of success, to come out victorious – weary but finally sleeping easier. All seem to share the most amazing strength, even through the tears (both happy, sad and those of sheer frustration).
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While some friends were amazed at our “strength” through his heart hurdles, we know that it was teamwork that won the day. And his strength. He was sick; we had to hang in there until our ‘team’ got him better and hope that his stoic little personality would shine through.
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I firmly believe that we (as parents) are forced sometimes to dig deep and find that extra something that gets us through, a something that makes us seem “incredible” to someone else looking in from the outside. I think everyone has this something extra, but only circumstances that none of us would choose force us to actually use it.
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I know we will never forget what has happened – some slowly fading scars criss-crossing our son’s chest and abdomen will forever remind us. He might need more antibiotics than “normal” kids, to make sure the threat of endocarditis (infection in the heart) does not knock us back down again. But we have made a promise to let Dash live his life – to play, to fall over, to yell, to skin his knees and be a ‘normal’ little boy.
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I admit a little part of this biased mum’s heart believes these heart kids are meant for something great. It is true that they are already great in the eyes of their parents – and those who have watched them climb their heart hurdles like champions. We will all watch you Dash, make your way in this world, with a little extra pride in our hearts.
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And so Dash, you should know now, why your mum loves just watching you sleep at night. Peacefully. Because you can. And because I can. 
HEART FACT: 1 child in every 100 born, has a heart defect of some kind. This means, in your life, you will know a family who has a heart child. Maybe more. Tell them they are not alone.
9 Comments
Pencil Writer
Wow! Y’all went through a lot. How blessed we are to live in a time when medical technology is capable of doing so much! Thank you for sharing such a heart-wrenching experience. He looks like a precious angle and I know you count your blessings every day with both your beautiful children.
Apparently a larger number of babies with imperfect closure of their hearts at birth has been discovered. Many far more minor that your Dash’s, are not discovered until much later in life. Only last year I was diagnosed with minor “hole(s)” in my heart. I was 58 at the time! Perhaps that’s why I’ve struggled with low energy, etc., and migraines from time to time. The Dr. and I decided at my age closing the hole(s) wasn’t the best idea–at least for now.
I’m so glad you shared your experience. Maybe other parents will gain hope and direction if/when they face similar problems with their children.
Kiss the babies for me. They are so sweet–beautiful.
A
Woah. Just reading your story I feel like I’ve run a marathon, I can’t imagine living through it. What a journey for all of you. It certainly does make you incredible.
Thank you for sharing.
debby
Oh, that picture of him sprawled, arms outflung, tubes everywhere…I cried. And was glad to see the next picture: his little eyes wide open as he played with his foot, looking just like any other baby, except for the tubes. What a roller coaster ride for you! And as awful as that experience was, now you understand ‘joy’. Isn’t life funny like that?
Bush Babe (of Granite Glen)
Thanks guys… sorry if it was a bit of a taxing read! If you saw him now you would never know (except for the scar of course). Actually, while it all came flooding back while re-writing this, I hardly think of this time these days. We are moving on… but you are right about understanding joy Deb… I savour it in the little moments like a fine wine. Pencil writer – an 80-year-old man was lined up for surgery straight after Dash for hole repairs. And he recovered beautifully. Amazing stuff. And I have a friend my age walking around with holes, and she is fine. Thanks for the feedback all.
Jenni
What a moving story. The photos in this post are so beautiful and evoke so much emotion all on their own. Thank you for sharing the words and pictures of Dash’s story–and thank you for the preview of the happy ending first.
Jen at Semantically driven
Reading stories like this puts things that can seem big in my parenting life, into perspective. I’m glad you all came out the other end with just some scars (well Dash’s scars I mean). What a gorgeous kid.
Bush Babe (of Granite Glen)
Jen, I need to just point out that I don’t ever sit in judgement on any parental dramas experienced by others… while I would NEVER wish our experience on anyone else, I also know that (compared to some) we have been let off lightly. And that a broken arm, or ADHD or cutting a tooth, or a kid refusing to eat veges – anything that involves pain or discomfort for the child – is terrible for a parent to witness and deal with. Perpective is great, til the next danged thing happens!!!
Thanks for hanging in and reading the whole epic… am trying to lighten up a bit now!
Tracey
Thank you for sharing this, Bush Babe, and for the perspective you put on such an experience. If you haven’t gone through something like that, it’s among your worst nightmares, and you wonder how on earth you’d get through it. Thank you for showing me how.
baby~amore'
Bravo to Dash and his team. Go YOU !
Words still fail me -though I have a thousand thoughts going through my head. But I can only say thanks for sharing Dash’s journey and your story.
“little ones who have put us all to shame with their amazing ability to forge through the pain and get stuck back into life with gusto” what a champ he and his heart kid peers are.
H is a dashing young fellow too – I am in awe that you don’t sit in judgement over other people experiences.Sometimes I hear some people whinging about the ‘small stuff’ and I want to say get over it.