Here I Am - The Reality of CHD

Facts and Introduction:
Congenital heart defects are diagnosed in 1 out of every 100 babies, making it not only the most common birth defect, but also one of the most deadly. Within the United States alone 1 in every 100 babies equals about 40,000 children born each year with a congenital heart defect. Many of which are not diagnosed until after delivery. Even in the greatest of odds, over 25% of children born with a congenital heart defect will have to have at least one intervention or invasive heart surgery to repair their congenital heart defect. 

These facts are horrific, they are terrifying, they stack the odds against children and families across our globe from day one...however...the most people recognize about it is a heart shaped red and blue ribbon, or cut photo contests with children showing off their "zipper club" scars from open heart surgery. Today...we present the reality of these congenital heart defects, the ugly side of that scar...the part that instills so much fear into thousands of families each day, the part that causes mental stress and agony, the part that will hit you in the core of your being. At the same time...this is the part that shows the courage of each family, the strength of each child, the hour-by-hour wait for a child to open their eyes again, to smile, to cry...the moments that cause one to appreciate every second of their child's life because without the advances in medical technology, without the amazingly skilled hands of doctors performing complex surgeries on something the size of a walnut...their child's life would be shortened drastically, and without warning.

The images below are raw, they are emotional, they are graphic in some ways...they are real...and this is the side of congenital heart defects that isn't seen unless you're standing in the hospital room. These images are not to be copied, but you may share this blog posting in and of itself as a whole. They are the exclusive right of myself and the Williamson family.  

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Meet Oliver - or as he is most referred to, Oli...this is from June of this year when we took some new photographs with Nicole Ballard Photography of our local littles wearing their hospital gowns for our website. 

He was diagnosed before delivery with Tetrology of Fallot w/ Pulmonary Atresia & MAPCAs; he has also been diagnosed with 22q deletion syndrome also known as DiGeorge Syndrome. He has an infectious smile, is cuddly as ever, and quite literally has everyone who meets him wrapped around their finger...especially me. Next fall this little super hero will be the ring bearer in our wedding, providing nothing crazy happens and he behaves himself in order to do so.

Fast forward to August 19, 2016 - Oli and his family we admitted to Children's Hospital of Philadelphia for what they hope will only be a week long stay (give or take) from his first open heart surgery. The night before they posted to his Facebook page the last photo of his chest without a scar...as the following morning they would walk to the doors of their personal hell, wait hours to hear the news his surgery went okay, that the surgeon was able to follow one of two plans created for him and that despite what he went through in that operating room...he was going to be okay, and in fact they would go home with their baby. 

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I arrived to CHOP the next afternoon...and this was the little Oli I saw, the reality of congenital heart defects, even though he isn't my baby...I was relieved to see him doing so well in comparison to others like him, but it was so heartbreaking to see and not be able to hold or even interact with the little man who has become my child in my heart. There's an eight month old baby somewhere in the room among the machines, the pumps, the monitors, the tubes, and all the wires too.

Oli was starting to run a post-surgery fever...which was to be expected according to the staff, most people and especially children will run a fever after surgery, particularly such invasive and complex ones as Oli's open heart surgery was. However, they will not medically treat a fever until it is at 105F or higher...in his case, they would give a little pain medicine, but the washcloths were used on his head and groin after they were dipped in ice-cold water in order to help bring his temperature down. He has IV's in both wrists, and even one in his foot in order to accommodate all of the medicines and fluids being given during his recovery. These included lines going straight into arteries in order to get the best assessment of his vitals and lab work.

There are even small reminders of home his blanket and stuffed animals - his Healing Helper wearing the very first hospital gown that was made for him before he was born, and even new reminders that while the hospital life isn't the greatest, it doesn't mean you can't make the best of it. This sweet Dr. Seuss blanket was quilted and donated to the hospital, more than likely by Project Linus volunteers an Oli was the recipient of it. "Oh the places you'll go..." immediately comes to mind when looking at this photo. All the places he can go because of this life-saving surgery that wasn't available 70 years ago, the things he will become because someone said these babies deserve a chance at life too, oh the things he will accomplish because he is still here, because someone said I care enough to make a difference...and that difference is going to be mending the broken hearts of children everywhere.

A few of those someones are right here...the nurse practitioner that came and checked in on her boy, listened to his lungs, his heart, checked his skin color and temperature...and just reminded mom and dad right now things are only thought about in twelve hour increments. No more, no less...if it can't be obtained in twelve hours time, it wasn't on the table for discussion just yet because he was still in a fragile state of recovery where anything could happen. In fact, the night before he decided to show off just how fast he heart could fly...and while he may have wanted such extra attention overnight, his heart needed more time to rest. Take your time Oli...you'll be moving those mountains soon enough! His wonderful nurse throughout my time there Saturday buzzed in and around, was as sweet as can be, and I swear the woman wears roller skates because she was in and out of the room like lightening and barely disrupted anyone or anything in the process - and she was in and out A LOT between drawing labs, changing medication dosages on the pumps, changing out the wet cloths, re-positioning Oli ​and just making sure everything was still moving in the right directions. I couldn't get my camera to focus once on her...but her hands were captured working diligently on drawing labs from his one arterial line to check blood gasses once again as the hope was come Sunday he would finally be able to be extubated and start moving those mountains in recovery in order to go back home.

Then this kept happening - his heart rate would keep climbing higher, hold steady, climb a little higher, hold steady...and at one point as inching close to 180 beats per minute again...his target heart rate was 140 beats per minute or less (within a certain perimeter). However, unlike the night before, his blood pressure and oxygen saturation remained steady which was a blessing indeed. There was some cause for concern, as his fever was increasing a little here and there as well and no one wanted his heart rate to spiral out of control...it was in this moment fear, worry, hope and love were all captured.

We've had a running theme song for Oli once this surgery was booked and really has become his war chant...it was a good luck sign before surgery and on my drives to and from played on the shuffle of my phone a total of four times alone...not to mention every time I was in the car and thinking about him, this song would come on - it is Rock You Like a Hurricane by the Scorpions. Now mind you...not the whole song, because well, he isn't allowed to date anyone without approval for starters, much less be love hungry just yet either...but it is the chorus that just struck at the right moment in a Facebook message about how Oli was going to rock this open heart surgery, "Here I am, Rocked you like a hurricane." In the moments when his heart rate was continuing to climb though, we thought to play some soothing music and see if that would help bring it down, because who doesn't love soothing music when they're upset...the song that played as much different, the words meant so much more, not only was it perfect for that moment, it was almost like divine intervention.

The song was He's my Son by Mark Schultz - I have copied the full lyrics here, because honestly the song's impact on every family in this type of situation touches their heart in so many ways. In addition to that, the song was written for a family whose child was diagnosed with leukemia...this I learned while writing this post and looking for the lyrics. Again, divine intervention in such a moment as this.

I'm down on my knees again tonight,
I'm hoping this prayer will turn out right.
See, there is a boy that needs Your help.
I've done all that I can do myself
His mother is tired,
I'm sure You can understand.
Each night as he sleeps
She goes in to hold his hand,
And she tries
Not to cry
As the tears fill her eyes.

Chorus:
Can You hear me?
Am I getting through tonight?
Can You see him?
Can You make him feel all right?
If You can hear me
Let me take his place some how.
See, he's not just anyone, he's my son.

Sometimes late at night I watch him sleep,
I dream of the boy he'd like to be.
I try to be strong and see him through,
But God, who he needs right now is You.
Let him grow old,
Live life without this fear.
What would I be
Living without him here?
He's so tired,
And he's scared
Let him know that You're there.

(Chorus x2)

Can You hear me?
Can You see him?
Please don't leave him,
He's my son.

During the chorus...this image was captured...in addition to the following two of where Jacqui and Andrew both had their hands. These bedside moments were the most intimate, emotionally raw, and inspirational of all. The moments where even though I was standing at the foot of his be, I'm pretty sure neither of them was even aware I was still in the room. All their focus, their thoughts, dreams, fears, and hopes were about Oli and the life they want to have as a family of five once they're back home again and reunited with his two sisters. In this moment everything stopped and all you could here was the quite hum of the machines and the song on the phone...so much was still unknown as to what was going to really happen, and so many possibilities of what could happen the mixture of emotions was the perfect recipe for chaos...and yet...here at his bedside they stood together reassuring not only Oli that it was okay, that they were right there beside him through thick and then, but reassuring each other that together they would bring their son home once again.

​"You are fierce. You're a survivor.
You're a fighter through and through.
Little brave, breathe.
There's a warrior within you. "
Beau Taplin - Lest we forget

To follow Oli's journey you can visit his Facebook Page at:
https://www.facebook.com/OliversHeartJourney/

There is also a fundraiser established for the Williamson family as well - all commissions will be donated directly to them to help with travel expenses, meals, hospitals bills, anything they may need during this time and the months to come.
​https://www.perfectlyposh.com/jlkidd/events/1212129