From Organ Donation To Graduation

February 13, 2019 2019 Features, advanced heart failure, complex heart defect, February 2019 Feature - Heart, Heart System, heterotaxy, large families, malnourishment, pulmonary stenosis, single ventricle heart disease, terminal diagnosis 0 Comments

Have you ever received news that was so hard to hear you actually felt like you were having an out of body experience?

The afternoon of Evelyn’s heart catheterization, the day that doctors and surgeons came into a small room to explain to my husband and I that our little girl was more critical than we could have imagined, was the day I experienced just that. That was the day that a doctor, whom we admire and have trusted with our two older heart warriors, could hardly look at our faces when opening the door to tell us the news.

It is forever engrained in my mind… how he walked in, shut the door and, with a small glance at us, went to a dry erase board and drew Evelyn’s heart. Then the words, “She is a very complex little girl.”

The drawing will never leave my mind; a picture of her blood flow to her lungs. The numbers that accompanied her left lung were jaw dropping.

Then he began talking and I could no longer hear medical terms. Fear hit and all I could think of was our family pictures, future holidays, family fun in the backyard and traditions… at lightening speed.

Images of her and fear of not having her.

In those split seconds our beloved surgeon walked in and shut the door. He saved the lives of Clara and Lewis since arriving home from China. He shut the door and with a somber face said, “I’m sorry but there is no way she can have the heart surgery we were hoping for. She would never survive.”

Bolts of lightening hit my heart and again more images appeared – telling our other children, seeing their faces, walking into my bedroom and seeing her crib empty. All these images shot through my mind within a matter of seconds. Tears filled my eyes and in that moment the vulnerability of what just happened was exposed. I turned to pull the Kleenex from the box and that is when it hit me: this wasn’t a dream.

When I went to reach for a tissue, I looked at my husband and saw him almost peeking at me. At that moment, he was seeing what my reaction would be. Dan is my rock and he is stronger that anyone I know.

We always tell our children and remind each other to always find good in the bad. “Be grateful. Turn the frown upside down,” we say.

But during those days following the devastating news it was too difficult to be grateful and, to be honest, I was having a hard time not being frustrated with God. I knew it was wrong but I was mad. I was mad that this little girl who has already endured so much neglect and hardship was now looking at a life that may be cut short far too soon.

Why? We did as you had asked, God. We ran to our daughter thousands of miles away. We opened our hearts. We risked the security of the shores and we drifted out further than we had with our two other heart warriors and we jumped out of the boat again. We were faithful. This isn’t what our family had envisioned! This is not how our love story should end!

Then God spoke to me through my husband, the man who loves this little one as much as I do. “Annette, I wouldn’t change a thing and I don’t think you would either. She is meant to be our daughter no matter what happens. She has a family and, even if it’s for a short time, she is ours.”

Wise words. Yup, he did it… my husband knocked sense back into my aching heart and told me to be grateful for what we have been given. Getting back up off the floor isn’t easy but when you have a hand that reaches down to help pull you up it can be accomplished. I won’t lie to you though… we both were and still are scared at what lies ahead.

The next couple of days we prayed. A village of family and friends prayed. Literally an army was being formed for this tiny warrior in the hopes that our consult only days away would bring us hope and buy us more time making memories and loving fiercely. During those couple of days I watched my two oldest children cling to their faith. I watched a school lift up our family and pray for a miracle to unfold, friends were fasting, candles were being lit in other states, a bible study group was in prayer and hundreds of people were including our daughter in their prayers.

God was moving. He was moving through people. God took a mountain and stuck it smack dab in our path and called upon hundreds of people to move it! Now I realize that moving a mountain is absolutely impossible but traveling up a mountain is not impossible. With prayer and an army of prayer warriors that mountain will not win!

The consult day arrived. The day we would learn our options. This time the door opened and Evelyn’s beloved cardiologist looked square in my face and said, “I’m about to send you on the biggest rollercoaster of emotions of your life, but we can make Evelyn a double ventricle!



I don’t have enough space and you don’t have enough time to know what led up to this medical miracle but let’s just say that it wasn’t “luck” that allowed Evelyn to have this option. God redeems. God hears the cries of his children. God is faithful.

Now, let me also be very clear to say that God doesn’t always answer prayers the way we would like. I am a perfect example of that. If God answered my prayers the way I would like then both of my parents would still be living and I would have the opportunity to introduce them to the granddaughter they never met. My point is that God does hear every prayer. God loves nothing more than when his children run to him. I know Evelyn’s story is a story of hope. We went from having a conversation about possible organ donation to her possibly only living into her teens to now living a life where she has the opportunity of burying her parents, not the other way around!

Evelyn has already proven to us that she has no plans of leaving us anytime soon. She has conquered a very risky surgery this past December, she survived a cardiac arrest and she has endured multiple tests and procedures to get her body ready for a future surgery. We’ve been saying that Evelyn is a puzzle. She is very complex and comes with many pieces that aren’t always easy to find. We know her masterpiece is far from over.

One piece at a time will get her to that “miracle surgery”, the biventricular repair. Until that time we will lace up our running shoes for one of the biggest races in Evelyn’s life. The mountain is still standing in our path. It’s still big and it’s still intimidating but with the army of people fighting and shouting praises to God I have no doubt we can help her climb that mountain.

The top of the mountain has a view that is like no other… it’s victorious! Once again, I find myself grateful for getting out of the boat. Had we not jumped we wouldn’t have the views we have right now.

God can’t perform miracles if you don’t jump. Trust him.

Take a leap.

I am so grateful to my husband for always being so steadfast in his leaps. Our little boat that takes on water now and then is my favorite boat in the craziest of seas. There is no other captain I would rather have out in the roughest of waters.

This little boat has shown me time and time again that God is far from finished with Evelyn’s story!

Friends, rock the boat; take a risk and see what God can do!

– guest post by Annette: email || blog || Facebook || YouTube

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