This is the first time I’ve written about how my little
zipper lad became ‘one of the club’. At first it was because it was all too
recent and raw, and then I wondered whether it was worth it. Then finally, I
just didn’t know what to say. I didn’t want to write a sob story, I didn’t want
to raise awareness nor did I want to fish for sympathy.
I did, however, want to explain to people why it was still
such a big deal and why I am often harping on about it. Probably why I am still
so paranoid and coddling of our dear Horde#3, also known as Bobby. And why I am
often seen checking his colour, heart, energy levels and so on.
Still, I decided it was time, and so here it is. Not one of
my most witty and sarcastic posts. But just how it is.
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| New born Bobby. |
My son was born with a hole in his heart. As I hadn’t
initially wanted a third child when I discovered I was pregnant again (long
story, not important) I often felt he was born with a broken heart. Still, I
also always had a feeling there was something up with him when he was still
inside me as the medical bods who would examine me would always get a funny
look on their faces when it came to checking the heartbeat. But I was always
told it was nothing and not to worry. Gee ta.
Then, when he was born he came out all blue and bruised. We
were told he obviously just got stuck on the way out and there was, again,
nothing wrong. And, seeing he was my third, and otherwise didn’t seem to be ‘different’
I went with what they said. Though, when I used to feel his heart beating… I
did wonder about it as I swore it didn’t sound quite right. It was as if there
was a cog loose in an engine or something.
And so, when we had his eight week check-up and were told
there was a ‘murmur’ the bottom started to fall out of my world. However, as he
seemed a perfectly normal baby otherwise, they didn’t rush us over to a
specialist. Instead, explained it appeared he had a hole in his heart and go
see the Cardiologist in a weeks’ time, there’s a dear. Which, naturally, was a
week in hell where Google was my enemy and greatest source of information on
holes in hearts.
By the time we got to the Cardiologist I was hoping amongst
hopes it was a simple hole in the outer muscle area and one of those ones that’d
seal itself over time. Of course I was never so lucky. My then nine week old had
a doubly committed sub-arterial ventral septal defect. Meaning, sooner rather
than later my little baby was going to need surgery.
Now, my life was pretty much going through a lot of, well,
shit due to my then employer not being that helpful or tactful about making me
redundant, I had a household to deal with and my two other lovely hordes to
tend to. So this was just some simply marvellous
news to be told and made me feel like I had won mother of the year. Yeah right.
To make it better, I was told to just go home and carry on as I had as, because
he appeared to be in no immediate danger, it was better to wait until he was a
little older (and bigger) before they sliced him open and fixed his ticker. I
was told he should be fine and could live to his nineties with this condition.
But, as the hole was right below the
valve between the bottom two chambers, the valves could invert at any time and
well… kill him. Congratulations, your boy has a holey heart; off you go home
and as you were now my dear. *sigh*
So, yes, I fell to pieces quite a little bit after that and
spent the next several months constantly watching our Horde#3. He slept on me
or next to me so I knew he was breathing, each and every chest infection (and
he got a lot as it was a symptom of heart issues) I was at our Doctors seeking
assurance he would be okay. My strong, independent, in control self became a self-doubting,
self-hating, chocolate binging so and so. Still, this isn’t about me.
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| Christmas Day 2009 - rusk up mummy's nose. |
Our boy grew and prospered and was only a few months behind
the usual baby milestones. Nothing concerning, but just more signs he wasn’t
getting enough oxygen to keep up hell for leather all the time. To distract us
from his heart, besides the continuous chest infections (you just had to have
him outside for five minutes and he’d get one, being a blessed winter baby), he
had mutant toes that needed looking at and physio to deal with, he had clicky
hips to be scanned and checked over and incredibly strong upper body strength
and agility that had him getting up to things a child his age shouldn’t be.
We got to see family, he got to meet some of them for the
first time and we got to stay with people we knew, loved and were comfortable
to be with. Rather than some isolated Ronald McDonald house in a strange city
miles away from anyone. And it was good to have a shoulder to cry on, and
indeed I needed to.
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| Dr Bob - day before his Op. |
Our Bob was checked into the Mater, got poked and prodded
and got to sit around in a cot for a day without much else happening. We got to
take him home the night he turned nine months old and promised to have him back
there the next day for the ‘big show’. Once there I felt so ashamed I had
fallen to pieces as there were so many children there with issues far greater
than Horde#3’s. His condition was a simple puncture repair in comparison. There
were far braver families there than weak willed old me.
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| Dr Bob - hanging out day before Op. |
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| Dr Bob - day before his Op. |
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| Dr Bob - Day of Op, last time seen without his 'zipper'. |
The day came, the operation roster was running behind schedule and I was about to take my baby and flee when they finally said it was time. They then took my baby from us, put him to sleep, cut him, cracked open his ribs like a chicken and stopped his heart for two hours. And, in that time, I was the most at peace I had been in months. I had lunch, I chatted, I sat in a waiting room in a mild daze. I was no longer scared, worried or in fear for my baby Bobby. Why? As he was in the one place that would be able to save him if something went wrong. And if they couldn’t, it just wasn’t meant to be. All the time I had been in charge of his care, I would have been helpless to save him. I could now allow myself to get close to him and not be afraid I would lose him. He was now safe and being ‘fixed’.
And fixed he was. His surgery took about two and a half
hours, he was then put into PICU (Paediatric Intensive Care Unit) for two days,
moved to the Close Observation Ward on the second day. Third day he went to the
normal ward and the following day, my birthday, discharged with a full bill of
health. It all sounds so easy and casual when said like that. But they were
indeed some very long days of my life and ones I honestly hope to never repeat.
When I look back on the pictures now, I think of how haggard he looks. When, at
the time, I kept marvelling at how quickly he was recovering and how great he
looked.
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| The day after his operation - still in PICU. |
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| The day of his Op, now in PICU. |
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| What we were greeted by 2nd morning after his Op - PICU. |
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| 2nd day after Op - Close Obs ward. |
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| Best birthday present EVER. Being discharged 3rd day after Op. |
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| Discharged, back at friends having early Easter Egg. Day 3. |
We then got a week to recuperate in Caloundra with family,
and were joined by my other darling children to be a family once more. And then
given the thumbs up to go home. And so we did.
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| Enjoying family time with his sisters at their Grandparents place - Caloundra. |
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| 14 days after his operation. Back home, bandages finally removed. Zipper boy is here! |
He had a few more cardiologist appointments and they moved
from weekly to monthly to annually. Time moved on, he caught up on all the
missing milestones within weeks and there was really no stopping him. In 2011,
at his annual check-up, I was told that there seemed no need to see him until
he was five, so that’s 2014 and, unless any of the signs or tells of heart
issues returned, treat him as normal. And so we have. An ordeal to last a life
time, and one that we will always need to make people aware of for future
health care, lasted only a few days and is now three years ago.
Onwards and upwards Horde#3, please let’s not have too many
more ‘acts of Bob’ and let’s get this toilet training under control!
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| Second year anniversary since Heart Op. |
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| First year anniversary after Heart Op. |
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| Third year anniversary since heart Op - onwards and upwards. |
