February: Heart Month?

If you by some chance haven’t seen, February is heart month. I don’t know if it’s because it has Valentine’s Day in it, (less said about that Hallmark extortionate day the better) but it is. Everything can have at least a day now. Did you all celebrate ‘National Measure Your Feet Day’ on January 23rd? March 3rd is ‘National If Pets Had Thumbs Day’, I’ll be all over that! Coming up between the 29th April and the 5th May is UK Coffee Week… because if you weren’t already aware, coffee is amazing! Back to the point… the 7th-14th is CHD Awareness week. It’s a week for people in the Congenital Heart Disease world to shout about it even more than usual. I’ll still be thinking about what I’m going to be doing for ‘If Pets Had Thumbs Day’ during this time but I’ll be all up in your face with some heart stuff! I share a lot of things heart related. It’s a massive part of my life so I’m not going to stop. I don’t care what month it is, for me and many others, if the month has a vowel in it, it’s heart month.

One thing that really grates on me though is ‘heart warrior’. Sorry to all you heart warrior advocates and term users, it’s nothing against you, it just doesn’t sit right with me. In the same way, I’m not a heart dad, Kerry isn’t a heart mum, Isla isn’t a heart baby. She’s a baby (well she’s a toddler but she’ll always be my baby). She’s called Isla; or The Bear. But she isn’t defined by her heart condition and she never will be. It might be that Isla doesn’t have a structural heart defect that I won’t let it be applied to Isla. I don’t know. It’s defined as: a brave or experienced soldier or fighter. She’s certainly brave and she’s experienced lots of battles. She’s definitely got the will to live as by all rights she shouldn’t have survived. But she’s not a ‘warrior’. She’s Isla and she’s been through a lot of shit.

Sooooo Heart Warrior qualms aside, Heart Month ‘19 won’t be a forgettable one for us. Isla has scared the living crap out of us all and we’ll probably spend the majority of it on different cardiac wards.

It was January 26th that Isla decided to have another cardiac arrest. I’d done her ecg at 7 that morning and her heart was looking absolutely fine so it was pretty unexpected. Up until that point the worst thing I’d seen was seeing Isla shocked; and that was scary as it technically means she was dead. However, this time it was on me. I’ve had to give a few recounts of what happened and it feels so surreal. At the time I acted on instinct giving chest compressions. I felt her heart and it was going ridiculously fast with no rhythm. It then stopped. I don’t know if this was a pause. It seemed to have stopped after how fast it was; like when you’ve come off the motorway, having gone 70 (and no more officer!), doing 30 feels like you’re going in reverse! She was definitely unconscious and looked dead. I gave her a breath and started chest compressions. Can’t even tell you how long for. I certainly wasn’t doing a Vinnie Jones rendition of Staying Alive. It was possibly the worst CPR anyone has ever given. Eventually though she looked at me pretty sheepishly so it must have at least made her decide opening her eyes would get me off her. Not the first time a girl has done that! 😂

By the time the paramedics had arrived Isla was laughing… like she does after scaring everyone half to death themselves. When Isla was on HDU I used to sing lots of songs to her. Once you’ve gone through all the standard nursery rhymes you just resort to what you know or what’s in your head…. Inappropriate or not – ‘Baby Got Back!’ anyone? I sang ‘Always Look On The Bright Side Of Life’ to her a few times. Well I think that’s Isla must have listened as she seems to have adopted the philosophy.

For life is quite absurd

And death’s the final word.

You must always face the curtain with a bow.

Forget about your sin.

Give the audience a grin.

Enjoy it. It’s your last chance, anyhow.

So, …

Always look on the bright side of death,

Life’s a piece of shit,

When you look at it.

Life’s a laugh and death’s a joke it’s true.

You’ll see it’s all a show.

Keep ’em laughing as you go.

Just remember that the last laugh is on you.

And…

Always look on the bright side of life.

She does always find a way to laugh and smile through things. Maybe she’s not a heart warrior but a heart comedian. She certainly has some funny rhythms and she seems to find it amusing after she’s performed and gives her audience a grin.

It has been decided that the next step on Isla’s journey is an ICD. This will shock her if her heart rhythm does seem to go off the beaten track. She will still need a truck load of medication to stop her from needing it all the time but it’ll be a nice safety net. We knew that an ICD would be the final destination for Isla because she is such an extreme case and LQT3 is such a dangerous condition but we had hoped she’d be a bit bigger and technology would have advanced a little first. However, this is Isla’s show and she decides which venues are on her tour and what jokes she’s going to tell.

February really is heart month for us. She’s going to be surrounded by Heart specialists, Cardiac doctors and consultants, Cardiac nurses and ecg machines. We know she’s in a safe place here so we don’t mind spending Heart month in hospital. It’s just another month for us. Unfortunately Heart Month is generally talked about by parents of children with heart disease and is ignored by everyone else. Often children with heart conditions have no visible identifiers. I don’t want to compare or take anything away from other conditions as all forms of child illness sucks. Unequivocally sucks. Congenital Heart Disease kills more children though than cancer does, but it gets less than half the recognition. That’s why us parents will share lots of stories and fill your newsfeeds with heart related facts during February. Raising awareness and promoting charities that help our kids is all we can do. Hopefully February will be a very positive Heart Month for our Heart Comedienne, the Long Cutie, Isla; but it is for us – just Month. February.

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