Waiting for the other shoe to drop

It’s a state I find myself in, waiting for the other shoe to drop.

It’s why I’ve been silent, why I can be distant. It’s a fear of the unknown.

When things are going good, I worry it won’t last.

Outwardly celebrating the good, inwardly worried about the bad.

Gripped with fear pulling into the hospital parking lot for a routine check-up. I don’t want to take you out of the car. I want to keep you with me where I can keep you safe.

I know you need to go inside.

I know it’s best for you.

But I want to shelter you from this.

I know that this is where you need to be, but it’s not where I want you to be.

I don’t want the other shoe to ever drop for you.

It’s my job to protect you, and I’m in constant worry that I may not be able to.

What-ifs plague my thoughts as I contemplate turning around and driving home.

Thinking that if I play out the worst case scenario, I’ll be better prepared, when the other shoe drops.

It doesn’t have to be this way.

It shouldn’t be this way.

We shouldn’t minimize the good, to hold off anything bad.

So for now, I’m living in the moment.

I’m taking life day-by-day, and I’m throwing the other shoe away.

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.

There’s sunshine after the rain

Dark clouds passing by overhead, trees swaying in the wind, branches snapping, rain pours down and the thunder rolls.

In moments like these, it can be difficult to see that there’s sunshine after the rain.

Learning of my child’s heart defect felt much like a powerful storm that sought to consume my little piece of the universe and in its travels, destroy anything in its path. Overtaking my sense of being, my feeling of safety and comfort and replacing it with a tumultuous web of uncertainty. In its quest, it overtook positivity and overshadowed emotions with fear and worry.

Some days, the rain became unbearable and I didn’t want to get out of bed for fear of drowning. Many nights, I didn’t sleep and most days, all I could do was gather the strength to keep the raindrops from falling.

And then there were days where the storm was unrelenting. I often found solace in the shower – allowing the rain to fall.

In those early days, time stood still.

Waiting. Hoping. Praying.

My thought process was clouded – I was tired, defeated, exhausted and I longed for the day when the storm would end.

Sending my baby into open heart surgery, brought me right back into the eye of the storm – just along for the rocky ride into uncertainty making it impossible to see the light.

It was hard to see then – in the midst of the storm- that there’s sunshine after the rain.

Looking back on some of the darkest days, I can see that there were rays of sunlight peeking through. From the nurse who went the extra mile to care for my baby to the friends I made in the CICU who understand just how difficult parenting a sick child can be.

I’ve learned through this journey that I can’t forecast my child’s future and I can’t predict when the next storm will appear, so I embrace this life and dance in the rain.

Becoming a heart mom has taught me that in any circumstance, even when it’s raining so hard that you can’t see, that the sun will rise again and there’s sunshine after the rain.

Live a life full of purpose and meaning. Be kind. Help others. Be grateful.

 We have one life to live, make it your best.

3 things every CHD parent is thankful for

Thanksgiving. A time for family and friends to come together. The scent of turkey roasting, the sound of children’s laughter.

Pleasant reminders of all that we have to be thankful for; and for us CHD parents, we have so much.

1. The medical community. While some of us are fortunate to be home with our loved ones this Holiday, many of us are in the hospital with our heart warriors.

We are thankful that the medical community never stops. We are thankful that they ensure that our children are well-cared for, no matter the day, or time.

When duty calls, they always answer.

They enter our child’s room with a hop in their step and a loving smile on their face. They are busy making children and families feel at home in the hospital this Thanksgiving.

We are so thankful for them; today and every day.

2. Family & Friends. To those who always have our back and stand by our side in both the good times and the very difficult and emotional ones, we are humbled by the support you provide.

Whether it’s a message of encouragement, a helpful meal, a simple call to check in, or lending an understanding, patient, listening ear, you know that parenting our heart babies can, and sometimes does, take a village.

We are thankful for our extended hospital family, full of doctors and nurses.

We are thankful for the new family and friends with whom we have formed a unique bond and special relationship with as we are united through our child’s CHD diagnosis.

To the expansive heart community who always supports one another, we are thankful.

3. The gift of Life. Tomorrow is not a guarantee. We are grateful for each new day we are given with our heart warriors.

We are thankful for each and every beat of our child’s sweet, little, mended heart.

We live each day to the fullest and try not to take ourselves too seriously. We know how precious this fragile life is, and we are thankful.

This Thanksgiving, take pause and appreciate the miracle and gift of life. For this beautiful life, we are thankful.

Happy Thanksgiving.

An open letter to pediatric heart surgeons

The first time we met, we shook hands.

Hands. Something one never gives much thought to, until that moment when a parent shakes yours.

Your hands are the…

Hands that save lives;

Hands that perform the work of miracles;

Hands that don’t shake or falter;

Hands that carry the strength and weight of the world;

Hands that never tire;

Hands that are steady and measured;

Hands that have comforted families in time of desperate need;

Hands whose job is never done;

Hands that saved my child’s life.

Before I knew you, I lived in blissful ignorance enveloped in the small problems of life that one has without perspective, pretending you didn’t exist. But you do exist, and because of you, I’m able to spend precious moments with my child that otherwise would be lost.

You’ve made my family whole, even when my child’s heart is not.

Continue reading An open letter to pediatric heart surgeons

Finding out your child has CHD

My son was diagnosed with hypoplastic left heart syndrome a short 48 hours after birth and I went from a feeling of absolute bliss to total devastation and shock.

Watch this short video to hear what it’s like when you find out that your child has been diagnosed with congenital heart disease.

Attending ICU Rounds

ICU rounds becomes just another part of your new hospital life and can be one of the single-most important parts of your day. It’s where you can find comfort and reassurance that there’s a team in-place caring for your child and where you can learn  what the plan for the day is.

Watch this video to hear more about why attending rounds in the ICU is important when parenting a child with congenital heart disease.