A million

The Facebook site I have for Evan is called, “A Million Hearts for Evan.”

Why a million hearts?

Well….because that’s what my boy is.

Actually – he’s 4 in a million.

His extremely rare defect is well…. extremely rare.

But my boy just can’t pick one….so….he has a couple of rare defects.

His main defect is Tetralogy of Fallot – 1 in 10000 babies born with this heart defect. In regular speak – the valve going into his lungs is small, his aorta curves a different way, the right side of his heart (the ventricle side) is a bit smaller due to the build up of muscle, and there’s a whole in the bottom part of his heart.  All defects normally are completely repairable.

He has two other defects are grouped in the rare syndrome – the 4 in a million bit –  called Heterotaxy Syndrome.  In regular speak, when he was being formed, organs didn’t get where they needed to go.  They aren’t in the right spot.  And often with that, the heart has some extremely serious heart defects.  In Evan’s case, he was born with the entire center of his heart not forming and some veins going to the wrong side of his heart.

Now…those two defects…the hole in the heart and the veins going to the wrong side…completely repairable.

So here’s the kicker…you take the Tetralogy of Fallot and the two defects….the hole in the heart and the veins…it makes a full repair extremely difficult.

We consulted with the best surgeons in the nation.  And they all came back with the same plan…a full repair – giving Evan a heart that is as “normal” as humanly possible with all 4 chambers.

And everyone came back with a Plan B.  Plan B is to give him a circulation called the Glenn that connects blood vessels directly to other blood vessels that go into the lungs. In theory, have his heart function as a single chamber.  And later down the line….he would need another open heart surgery called the Fontan…to “complete” the circulation.

Both plans would extend his life….Plan A – the full repair – absolutely optimal for him.  Plan B – a back up option that will give him many years…just a much harder road.  And quite frankly, seeing kids grow up to be adult with a single ventricle…is a blessing…because just now….in this time…the “next” generation is just now surviving with the invention of surgical interventions like The Glenn and the Fontan.

So back to my boy…

I was crushed when we got the call today that Evan’s heart was not optimal for a the full repair.  My surgeon made the decision to go to Plan B based on a number of factors but the bottom line was if he gave my son a 4 chamber heart….his heart would be so very sick from this day forward….completely “repaired”….just limping throughout life.

So, Plan B is  now my son’s circulation.  His heart….that “technically” has all the pieces of a normal heart – 4 chambers – just a big honkin’ hole in the middle of it all – is now functioning as a “single” ventricle.

My doctor friends are cringing.  I know you are.

Put down your text books and the Pub Med articles.

Because right now…I’m looking at my boy…who made it 9 months in my belly…when he shouldn’t have…

My boy….with one of the rarest of the rare syndromes out there…has reached every milestone and is in the 90th percentile for height and 50th for weight…who should be “developmentally delayed” based on his hospitalization times and his lower oxygen levels….and should be classified as “failure to thrive” based on his condition….

My boy…has surpassed every expectation of every doctor and nurse we meet.  Every.single.one. pleasantly surprised when they meet my chunk a monk.

I don’t know what this new life means for him.  I’m sure his life will be tougher.  I’m sure he’ll tire easier.  I’m sure he’ll have a harder time getting over illnesses.  I’m sure I’ll still keep him in isolation to protect him…

Hold on a second…

I spent the past week in a puddle of tears, pleading to God to give Him a heart that was healed.

Friends….as hard as it is for me to accept…it’s always been’s God’s timing…and not mine.

I’ve spent too many days recently wondering if my boy will die.

Today he is alive.  Right now….he is alive.

So, I’ve decided to stop setting my son up for failure.  Stop thinking that his life will be so much worse off just because his heart’s not healed.  I never once stopped to think….maybe this was just the first part of healing…

My boy is alive.  God willing these critical 72 are the most boring and uneventful recovery of all time.  God willing the rest of our hospital stay is just as quiet and boring.

God willing these things…

My boy will live a full life.  He’s battling through too much to make him live a life in a bubble.  Of course I’ll still protect him all I can.  But, I’m going to let my boy live.  I’m going to let him live the life he deserves.

With a heart that’s not quite whole…

But a heart that full’s of life…

 

Comments

  1. thank you for explaining in plain terms for us, even when your friends are cringing! 🙂 we’ve been praying all day for him, and we are so glad to hear he’s doing so well!

  2. I love this. I love your courage. I admire your strength.

    “It’s all in God’s hands” – so much easier to say than actually allow. We fight so hard to control everything around us, thinking that our hands can make things better… not realizing that His hands are what carry us through.

    We wish we knew the reasons WHY things like this happen. We spend out time praying for answers.

    We don’t need to know they why… we don’t need to have the answers.

    The answer is… it’s God’s will. I praise you for suffering through this so gallantly. I pray for God’s will to be merciful. I pray for His will to match your desires. Most of all, I pray that whatever His will may be, that you and Craig can find peace.

    Now rest…. the first 24 hours of his recovery will be over soon. One day at a time.

    Psalm 33:22
    Psalm 103:3
    Psalm 55:22

    Michelle 🙂

  3. Misty Whitchurch says:

    Bless both of your hearts tonight. I’m praying for a very quiet uneventful 72 hours.

  4. My thoughts in a similar vein after Cam’s Glenn plus a big hug from me to you:

    “As I was listening to the chopper blades on Thanksgiving Day, I was reminded again to give thanks for the days we are given on this earth. They are gifts, even the hardest of them. I thought of Julia, a 13 year old girl who has lived here at CHOP since May. She got her heart this week because another child lost a life. What a hard thing to understand. I thought of Riley who spent 5 months never breathing outside a hospital before she was gone. To give thanks for such a life is paradoxical. And Spencer, whose heart condition is so radical, and who is with us even now only by the intervention of God. And Stosh, our sweetest of many heart friends, who struggles to grow with a heart unable to keep up its function while his parents juggle two other children 2 hours away. Yet these days for all these and more are still good days because they are from God. And somehow these special lives pierce through the mists of horror to perceive joy…always to be surprised by it.

    Pain causes any normal human to curl inward, to protect, to burrow up like some pathetic porcupine who has lost its quills. There is only one person I know, who when in pain, stretched out his arms to take more of it- all of it- rescuing his people of their own self-inflicted curse. To understand that sacrifice means understanding how sorrow and joy can blend almost into one; giving birth and being reborn. Praise God from whom all blessings flow; even so, come, Lord Jesus, come.”

  5. Erin Bradley says:

    You are constantly in my thoughts Czarina! My cousin with HLHS has gone through these surgeries. He is 16. He has faced many battles his entire life, as will your little man, but none of you will face them alone. You are in my heart and my thoughts!!! I’m proud of you!

  6. Alice Clark says:

    I’ve asked everyone I know to pray for Evan and your family today. It’s amazing how attached I feel to him, when I have never met him. One really special lady I know tried to explain about how our prayers kill the devil’s demons by the thousands every time one person prays. I don’t really understand what she told me, but it made sense at the time. She put her hands on my shoulders and she said a lovely, specific prayer for Evan. I’ve always believed she has a special connection to God. She also told me how this entire experience has reached out and touched so many people and it has shown a lot of people that prayer works. Not only is he a little warrior, he is a messenger for God. Bless you and your family today, Evan. God is good all the time. Love, Alice

  7. Sending lots and lots of good thoughts for you guys. I’ve been thinking of you guys all day.

    I was born two holes in my heart and a huge litany of medical problems. I was on oxygen for the first year of my life and had numerous surgeries. Doctors predicted I’d never have enough stomach muscles to be able to sit up and at times were worried that I would be mentally handicapped. Instead, here I am nearly 30 years later, living a totally normal life with a body that not only overcame dozens of obstacles, but later carried a baby of it’s own. I believe in medical miracles because I am one.

    Hugs to you guys. It’s gonna be okay, I just know it!

  8. I love this. I’m praying for your sweet boy!!!!!

  9. Praying for you Czarina and Evan! {{{HUG}}}

  10. This brought tears to my eyes! What a beautiful well written blog. I came to see your little munchkin Monday night but you guys were all sleeping so soundly that I didn’t want to wake you. Hope you are holding up!