Friday, July 20, 2012

Weekly drawing 50: Cardiomyopathy

Cardiomyopathy attacks my little girls big heart

At home after many months in a critical stable condition with a pacemaker
This weeks drawing I'm processing one of the scariest times of my life. When I thought I'd lose my little friend and loving baby girl to heart disease. She had always been such a strong and healthy baby. My wife and I were shocked by the news. During this time cried for two weeks and I actually said goodbye to her three times.
The week prior to her birthday Liberty was dis-interested in her usual favourite places the playground or the local pool. She had a small cough and was breathing noticeably heavy when asleep. We thought she wasn't eating very much because she was teething. We thought she'd lost weight because she was walking. How wrong we were...

First Birthday
During her birthday party she wanted to be held by Mum (Bec) the whole time instead of socialising which was out of character for Liberty.

The day after her birthday. She had an extremely sweaty head (beads of sweat) and slept most of the day and night.

The following day Liberty showed no improvement after nurophen we went the local GP. Thinking we would get the over anxious parent talk. GP told us to go straight to Emergency get x-rays and we would probably stay over night. At RPA we were told she had Cardiomyopathy (a swollen oversized heart). I knew this was serious and couldn't stop crying. We were transferred to Randwick Children's Hospital after a scary night Libby was successfully ventilated the next day and we somehow faced the seriousness of this horrible situation never leaving her side and rarely sleeping.

We couldn't of done it without my mother-in law who stayed with us at the hospital the entire time. She is an amazing person. I think I have the greatest mother-in law in the world!!!

We also owe a great debt to the NSW Public Health System's amazing Doctors and Nurses, Social workers, Ambulance drivers, NETS, Music Therapists, Therapy Dogs, Starlight Children's Foundation, Heart Kids, The Book Bunker, our loving family and friends. Also to Liberty's amazing strong will. All these I feel carried us through these horrible three months. 

She is currently in a critical stable condition with a pacemaker and many medicines at home. She is walking again and looking happy and having fun.

Dinner time
A poem for Libby, March 27th
Nothing is black and white except our love for you

How did this happen
How did we get to this stage
You've always been so strong
Isn't a big heart an asset

Well I want to go home,
I've had enough.
Can't we just go back to our normal life.
With only you, Mum and me. Walks to the park, the library, the local pool, playing in the hall and in front of the mirror. Dinnertime, bathtime, bedtime and family hugs.

My hope is that the Cruel hand of fate is running late. I wish he would sleep in or have the year off. Because we all really need a break.

Love Dad

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