It's hard to believe that one year ago today, I woke up early and put Sadie in some jeans and a pink shirt with green polka dots. Shawn had planned to go into work a bit late, and as a family we drove to the ultrasound clinic. We were so excited to find out if our baby was a boy or a girl. That day ended much differently than we could have ever imagined. The sex of our baby no longer mattered to us. All we wanted, was a baby that would live.
The most difficult task that day, was calling those we loved to tell them that our baby was missing 1/2 of her most important organ, her heart. We were quickly exhausted and found ourselves unable to continue. With that, the blog was born. A way to share the ups and downs with everyone, all at once.
We never imagined that total strangers would read about our unborn child and begin to pray for her. As family, friends and complete strangers began to follow the blog, we were humbled by the response. Throughout this year, we have never doubted that we are not alone.
One year after this life altering news, we find ourselves back in Calgary with our daughter (Hope was airlifted back to the Calgary Children's Hospital this morning). Hope has 2 heart surgeries behind her and we pray, a future ahead of her. So much has changed, but one thing remains. We believe that God is in control and is carrying us through this journey.
Recently my mom shared this journal entry with me. She wrote this 2 days after I made that first difficult phone call to my dad. I'm sure he never imagined the words that would come out of my mouth that day as he answered my call. "Dad, there's something wrong with the baby. It's missing half of it's heart and it doesn't look good. Please tell mom to call me." As she processed the devastating news, she wrote this...
"It’s been 48 hours since that heart breaking phone call that brought a quick end to just an ordinary day. I had already been dreading the day – seems so lame now to think I thought going to the dentist to get my teeth cleaned was daunting. So petty and frivolous now. As I drove into the driveway of the dentist, trying to shove an apple down my throat so I wouldn’t be hungry during my appointment, I scrambled to answer my ringing cell phone. Ian’s voice was direct and suscinct. “Call Amy right away on Shawn’s cell phone. There is a problem with the baby – it only has half a heart”. My first thoughts were, “that can’t be” – how can a baby be living at all if it only has half a heart? I first ran into the dentist office to tell them that I had a family emergency and couldn’t possibly stay for my appointment – I told them I would call to rebook through what was the beginning of a waterfall of tears. Before leaving the parking lot, I nervously dialed Shawn’s number and Amy immediately answered. She was frantic and a couple of times I had to ask her to calm down so I could understand her. She said again “the baby only has ½ a heart”. Her words felt like heavy weights crushing my chest. I could hardly believe what I was hearing. I was inwardly hoping she was simply overreacting, especially with my already preconceived notion that surely no one could even be alive with such a thing - even while in the womb!
As the day progressed, it became increasingly clear. Amy and Shawn’s baby did indeed only have ½ a heart. Only the right side (the weaker side) of her little heart was working. The formal diagnosis is called Hypoplastic Left Heart Syndrome. It is a very rare and complex terminal heart defect. Out of 10,000 babies being born, only 1-3 babies are born with this. I couldn’t get to the internet fast enough. Once I knew that Amy and Shawn were safely home and no doubt attempting to process this devastating news themselves, I tried to absorb all I could in order to get an idea of just what we were facing. The statistics are staggering and the stories a mixture of encouraging and heart wrenching. Basically, the only way to save these little ones’ lives is to risk them entirely. The tears were uncontrollable. Almost 48 hours has passed since then. I still can’t believe the numbness that has engulfed me. As I sit here writing this, I am struck by the inability that has overtaken me to do anything remotely productive. I seem to be only able to just sit. And pray. My thoughts constantly leap to the fact that the only hope that any of us has in this situation comes from God. I am so mindful of the fact that he has fearfully and wonderfully formed and made this little girl in Amy’s belly and He is still a God of miracles. The Red Sea was no great feat for Him. Why, he could shut the mouths of lions, cause the sun to stand still, turn water into wine, make a donkey speak and over and over gave sight to the blind, leaping legs to the lame, and even life to the dead. He is certainly capable of fixing the broken heart that he has already made. My first task at hand was to raise up an army of prayer warriors. Ian and I have always acknowledged the power of prayer and I knew that, if we were going to survive this nightmare and see this little girl have any chance at a normal life, God had to do the work. We needed people to pray. I emailed and Facebooked just about everyone I knew and told them of the situation at hand and asked for their prayer. I have never before coveted the prayers of God’s people for anything in my life like this. I am desperate for friends and family and complete strangers to join with us in praying for this little life. We don’t know what is ahead but we know who is leading the way. We choose to walk by faith and not by sight. We choose to simply trust.
“Oh God, our lives are in your hands. And the life of this little girl is laying at your feet. We know that you have intricately made her and that you know every detail of her underdeveloped heart. We don’t ask why because how we could ever question an all-powerful God on His methods or plans? We recognize your power, your sovereignty, your Holiness. And we simply put it all in your hands. I have so many fears, so many unknowns, so many worries. But I give them all to you. God have mercy on us. God, wrap your arms around Amy and Shawn and give them constant assurance of your presence. Let them know that you are there, walking every step of this torturous road with them. May they have a peace that is unexplainable. May they have a strength that is beyond imagination. May they have a hope that is unprecedented. God, work a complete miracle in this little girl. Give her the heart that she needs to live in this world and become a world changer for you. Give her a functioning left side of her heart and grow the arteries, aorta, inferior and superior vena cavas and all the correct valves etcetera that she may need to have a healthy and pumping heart. I pray that, if it is not your plan to heal her heart completely before she is even born, that the mechanics and anatomical prerequisites to be able to withstand any surgery that she may need will be there to give her the best fighting chance and outcome. God, work a miracle in everything you do. We love you and we look to you for our hope, strength, wisdom, and encouragement . Lead on oh King Eternal.".......
As you know, God did not choose to heal Hope's heart before she was born. That was obviously not His plan for her life. He did, however, graciously allow her to survive two open heart surgeries and numerous procedures and we thank and praise Him for that. He has continually been at work in ways that we probably may never even know and He has used Hope's journey to teach us more than we could have ever imagined.
A beautiful, yet difficult year comes to an end. We look forward to the future although it is full of unknowns. To the masses that have been so faithful to pray for us and carry our burdens as their own, we are forever thankful.