Thursday, February 25, 2016

Day 25 - Evan and Ava

We saw his face in April of last year and knew right away that he was our son. But his untreated heart and lungs were so very sick and we didn't have long to get to him. Would we make it in time? It seemed impossible. Paperwork and money, process and procedure. But four months later, mountains were moved and he was on his way home. Only God. Evan loved being home. He was so happy to finally have his very own family. We were so thankful to finally have him. What we always feared but didn't know for certain then was that had he not come home when he did, he wouldn't have come home at all. A few days later, sudden fainting brought us to the hospital. In addition to his congenital heart defects, Evan came home with severe, untreated Pulmonary Hypertension. In Evan's case, his Pulmonary Hypertension was caused by a lack of surgical treatment for his heart. When the pressure in his lungs would get too high, oxygen to his brain would be cut off and he would faint. At any moment, he could die. For five years, he had been fighting for every breath. What could have been prevented had he received cardiac intervention as an infant will be lifelong and life limiting.

One month, two hospitals in two states, and a life-saving open heart surgery later... he was back home and we were full of hope that he could really start living and making memories with a healthier heart and lungs.

But just a few days later, off to the hospital we went again. He was initially admitted for unexplained fevers, then developed severe double pneumonia. His heart and lungs deteriorated rapidly. He was in severe heart failure. His Pulmonary Hypertension was so severe, in fact, that his lungs were literally hemorrhaging. We were given the option to do a very high risk open heart surgery that might extend his life, or to do nothing at all. Without surgery, he would die. While we were so scared that we could lose him, we chose hope. He wasn't supposed to survive. He fought hard for 88 long days, mostly all in the CICU. And he won. He was loved and prayed for by so many people. Our prayers were answered and Evan was finally able to come home shortly before Christmas.

Evan's story was once one of loneliness and hopelessness. But it is now full of so much love, faith, family, commitment, and community. Hope did that. Some wonder why we would ever choose this life of hospitals, surgeries, medications, and uncertainty. But we would do it all over again, because our yes changed our son's life and it has changed ours.

Evan's fight taught us that saying yes to hope is always worth it. While his condition will be a lifelong fight, he will be going to battle with a family by his side. And that's why we are running to Ava. Yes was easy. A thousand times, yes. Why now? Hope is why. No matter where you are and how hopeless your situation may seem, there is truly always hope.

Ava has very complex heart disease, multiple gastrointestinal issues, and very unique anatomy. Further treatment may not be possible. But it doesn't really matter. She is precious and already so loved and prayed for. She has a family ready to help her fight, something that she has done on her own for far too long. God is bigger than any prognosis or diagnosis. He can move mountains and answer prayers. We believe that He has and that He will again. He is a God of hope. And hope changes everything.

So we're doing it all over again. Because her life matters right now. Because there is no room for fear in love. Because it doesn't have to make sense. Because God's plans are always better and they never fit into neat little convenient boxes. Because stepping out in faith is always worth it. Because every heart matters and there is no heart too broken. Because yes can change a life. Because it changed ours and it changed his and we know that it will change hers. We will run to her. Because she's worth fighting for and she deserves to have her very own family fighting alongside of her. Just like Evan.

Because love recognizes no barriers. It jumps hurdles, leaps fences, and penetrates walls to arrive at its destination full of hope. ~ Maya

Hope for Evan & Ava


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