Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Wednesday, July 31, 2013

Baby boy is one today!

My baby boy is one today, which in the world of heart babies, is a miracle, a statistic, a blessing. And this week has been emotional for our family. The past year was the hardest year I have ever endured, and I must say, we survived. In fact, I would argue, we thrived. All of us, as a family. I have never been one to be very good at asking for help (Murph used to joke about it), but this year, I have learned that help is needed. We could not have survived this past year without the help of family, friends, colleagues, nurses, doctors, specialists, and teachers. Our community of love grew larger and deeper this past year. 

Lincoln was born at 9:07 a.m. as a perfect, healthy baby boy. We marveled at his dark hair, dark eyes, and chubby cheeks. Getting to the hospital was difficult as trees were down, blocking major roads, and Lincoln had broken my water on a night of thunderstorms. We joked on the way to the hospital that we hoped this was not foreshadowing. And it was. Three weeks later, another thunderstorm hit as we discovered that our perfect baby boy had major heart defects, and would die without surgery. For three months, I lived every day watching my baby failing to thrive, and monitoring his heart failure symptoms to help buy time for his heart and body to grow for surgery. Those three months I cried every day, went to the doctor's office at least once a week, and struggled with nursing a baby who could not breathe well. We did not sleep much - listening to his raspy breaths, and then when he would enter a deeper sleep, panicking because we thought he wasn't breathing anymore. Thanks to the Velie's portable rocker, he slept next to my bedside, so I could watch him closely. My mom would come hold him so I could try to spend more time with the big boys, and to just give me a break from the stress and anguish. I remember her saying at his October cardiology visit, "Something needs to change. None of you can go on like this anymore." And it did- that day, we scheduled his life-changing surgery in hopes that all would be fixed.

His next thunderstorm hit on November 29th, after his life-changing surgery did not work. We knew something was wrong the days following his surgery, and that morning, Murph and I prayed over Lincoln, begging for the Lord's will to be done. And it was. Hours later, he was rushed into emergency surgery and that is when his repairs could not be fixed, and his mitral valve was replaced. 14 days later, we were able to bring our baby boy home. We had to hold him like a newborn for almost two months while he recovered due to his OHS and chest wounds. I cried more in the first five months of his life than I have in my entire life. 

God's miracles have surrounded our thunderstorms, and we are eternally thankful for them. He did not always give us what we wanted, but more importantly, He has a plan. And we are finding peace with that still today. "God doesn't give you what you can handle, He helps you handle what you are given" is a quote that has helped us through it all. Lincoln's presence is the rainbow beyond the thunderstorms in our life. That baby boy is the happiest baby I have ever seen. He has smiled through it all, even in heart failure and when recovering from two OHS in one week. He smiles after his blood draws, injections, doctor appointments, and INR readings. He truly is a light in our life that makes the storms all worth while. His brothers worship the ground he treads on, and they worry about him like we do. They know, he is a miracle and one to be cherished. It is amazing to witness God's love in my children's souls. They are so patient with him, and with us, as we are constantly learning how to be better parents.

So today, we are celebrating his milestones, both good and bad. He has overcome so much to earn his status as a heart warrior. He has furiously challenged himself to catch up since his surgeries, and he is so proud of himself for each milestone he achieves. He is loved by so many, and brings smiles to the faces around him. Today is a day to celebrate his successes, his trials, and  his light in our life. Every tear we shed was worth it to see our baby boy growing up and loving life. And we are forever thankful for the joy he brings to our family. Happy first birthday baby boy!

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