One in a hundred

From the outside you’d never know it.

But this little warrior, has the battle scars to show it.

An incision down the chest, sometimes the only way you can tell.

That this tiny hero, has been through hell.

Resonating still, the moment when CHD was discovered.

The following words, slowly uncovered.

“Please sit for what I’m about to say,¬†I’m sorry to tell you this; there’s something wrong with your baby’s heart today.”

That moment, impossible to forget.

That moment, when you learn to live life without regret.

Filled with fear, heartache and worry.

Time standing still, yet moving in a flurry.

CHD knows no bounds.

It appears in utero, but sometimes it’s not immediately found.

1 in 100.

Affecting a lot more than you know.

CHD is silent, taking little beautiful lives as it goes.

It’s the number one cause of childhood death, something all CHD parents fear.

This is a reality, and we cherish our babies and hold them near and dear.

“So they’re fixed now, right?” we hear after a surgical correction.

Unfortunately, no. There is no cure to restore their tiny broken heart to a state of ultimate perfection.

“But, how can that be when they appear so healthy?” strangers often say when they see.

But, that’s just CHD being CHD.

Affecting mostly inward, and often, not out.

Sometimes it’s hard to believe the battle these kids are fighting, beyond any doubt.

They’re fighters, heroes and warriors going through so much more than we know.

Their fight is never done, with still so much more to go.

Surgeries, catheterizations, hospital stays, pokes, prods and medication.

If it were our choice we wouldn’t choose this kind of life for our tiny human creation.

We were selected and chosen to be blessed with these miracle babies to love and cherish who teach us so much.

About life, love, strength and resilience.

And never giving up.

The fight isn’t over until we find a cure.

Raising awareness is our first step – that’s one thing we know, for sure.

Next comes funding, research and innovation.

To ultimately find a cure for the next generation.

*Written in honor of the tiny heroes fighting the biggest battles. Share to raise awareness for congenital heart disease*

5 must-haves for the cardiac ICU

1. Fisher price soothing snuggapuppy

If the fact that this little gem has a big red heart on it isn’t enough to sell you, this sweet stuffed animal vibrates and plays soothing music. For just under $10, it’s perfect for when your little one can’t be held during their post-op recovery. I’d turn this on in my son’s hospital bed and he would settle right out. Bring extra batteries, just in case.

2. Side-snap onesies

Easy-on-and-off, these are a must-have clothing item for the CICU. Simple enough to navigate around wires and easy enough for doctors to gain access if needed.

3. Blankets, blankets, and more blankets

There’s nothing home-like about hospital grade blankets. Bring in some soft, warm blankets that feel and smell like home that your baby can cuddle up with. Don’t forget about receiving blankets. You can also use these to make your little one’s crib, and they’re perfect for a simple swaddle.


4. Hats

It can get a little chilly in the ICU. Bring along a few knit hats to keep your little one toasty. And really, is there anything cuter than a baby in a knit hat?

5. Notebook & pen

There’s lots of information thrown at you every day, all day. Keep a notebook and a pen handy to jot things down. Take notes during rounds, and write down any questions that you want to ask. This can be a very stressful time, and it’s easy to forget things.

This isn’t an exhaustive list – and of course, you’ll want to bring things for yourself too!

Stay strong.