Well here it is my first blog!
It seems only fitting that my first Blog should and would be about something so close to my heart.
Its a story that 100% of the time will bring me to tears, but in telling it I know I can make a difference in hope that parents of the future will never have the same story.
February is the month my husband And I got married (10 years ago) it is the month of leaps years and also of Valentines day where love and hearts fill the shops.
Nearly 5 years ago, the meaning of our February changed forever, as it became the month that we would come to know as Congenital heart defect awareness month (CHD).
5 years ago, I fell pregnant with our first child, the pregnancy was perfect, and textbook, and just like the movies (minus the pickle and ice cream cravings) we spent our days picking names, buying clothes and road testing every pram ever made.
The long awaited 20 week scan rolled around the scan that could answer the ultimate question would we be attending ballet lessons or soccer games in the future.
We were in fact destined for soccer games as we were told we had a healthy baby boy, who would in 20 weeks be here to meet us, JOY!
Excitement grew as i reached 40 weeks.... and then past it, and excitement lessened as 10 days later I still was NOT holding my son in my arms, but tightly in my tummy! eviction notice after eviction notice was given but baby boy decided he would not be making an entrance anytime soon, perhaps he knew of what we were yet to discover...
A date was chosen and i was introduced after a wonderfully painful Labour our 7 pound son Slipped into the world and gave us the most important title and roll of our lives, we were parents!
This was, as any parent would know THE happiest moment of our lives, its a dream, its hope its a masterpiece and without a doubt a God given miracle.
Daddy was asked to cut baby boys cord and with one snip our dream burst,smashed out our feet and within minutes that dream was nowhere to be seen as we were now living our worst nightmare, something was terrible wrong with our baby!.
Noah started turning blue.
I don't remember much from then to when I was wheeled into the special care unit to see my son, who was barely hours old and fighting for his life, where my arms should have been holding him, were wires and equipment and where laughter and well wishes should have filled the air, there were alarms, monitors and a eery silence, what nobody wanted to tell me was painted so clearly on all their faces, Noah was fighting for his life, and he was not winning.
The first time I saw Noah is special care unit Port Macquarie
I was approached by the head paediatrician who spoke the words no parent should ever hear, he told me that Our son wouldn't make it through the night, we were told to have him baptised and say our goodbyes.
How do you say good bye to someone you have only just met, but your already so deep
ly in love with?
I held his little hand and I sung to him , as words would never come close to being enough in a moment like this.
(singing)
Doctors couldn't tell us what was wrong with Noah as he was so close to dying but still just holding on, thankfully Noah had strength that no one could diagnose and hours later was flown to the Children's hospital at Westmead where that night we were told our Son had A congenital heart defect (broken heart)and was critically ill, we were given no promises that night, not even a hope of a future with h
im, but he had been diagnosed so we knew something could and prayed would change.
Noah survived his first night , he defied all odds and made to day 4 of his life where we were finally able to hold him minutes before he was taken into theatre to undergo open heart surgery.
(Noah with Gramma, before his Open Heart surgery)
at this time we were surrounded by parents all going through the same thing, we had all had babies born with broken hearts, all holding our breaths and praying all was OK, Some had been picked up at their 20 week scan, others like us had emerged in a world we had known nothing about.
Did you know Heart defects affect 1 in every 100 babies.
Did you know that 6 Aussie babies are born a day with a heart defect?
Do you know That congenital heart defects takes more young lives then ALL child hood cancers COMBINED?
Children with heart defects are taking up over Half the ICU beds in all children's hospitals.
and heart defects are taking more lives than all childhood diseases combined!,
We found all this out while we waited for our son to come out of open heart surgery.
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| (All his monitors drains and equipment) |
( the first time we saw Noah After his Open heart surgery, 4 days new)
We were one of the lucky ones, through Prayer and amazing doctors and surgeons, and a will of our amazing little boy, Noah made it through his surgery, he stood up to every complication, he said no to giving up and at 4 weeks old we were told we could take our son home.....
Things weren't easy but we had a new sense of reality our baby had an extra special
heart, and with that came added fears and concerns, but we have never looked back.
Sure there are days where if he sleeps to long we worry, or if he is sleeping I'm known to slip in and lay my hand on his heart to make sure its still beating, We hold our breaths at every cardiologist and doctor appointments and not a day goes past when we dont think of the what ifs. Ive met so many families, living and dealing with the same fears and concerns, and seeing their children return to hospital for more and more heart surgeries.
(Noah today, 4.5, The absolute joy of our lives and the amazing Big brother to Isabella)
Heartkids Australia is the only charity in Australia that deals solely for this cause, and with no government funding its important to do some of the leg work.
Heart defects develop soon after conception ,before some women even know they are pregnant.
Heart defects affect any race, age,or religion, nobody knows what the cause only that its affecting 1 in 100 births.
More babies are surviving today than ever before as more research and knowledge is attained.
Congenital heart defects range from holes in the heart to more complex cases, some require open heart surgery, others sadly cannot be corrected.
The month of February as its known for its Valentines heart has been the month chosen to help in raising awareness for this silent disease affecting so many of our babies.
You can purchase Heart shaped donuts from all Donut king, Michelle's patisserie has write on a heart for 'heartkids' and all Brumby bakery's are taking donations and raising awareness.
Or donations can always be made at heartkids Australia. com
More awareness more funding, more research, more children surving .
Vee xo
