Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

Sunday, November 23, 2014

Two Years Later

Two years ago, I was absolutely petrified, emotionally drained, and physically exhausted. After watching him gasp for air for 85 days, my baby boy was diagnosed as "failing to thrive." Taking him in for weight checks every week and listening to jargon I didn't understand. Trying to understand the functioning of a normal heart, and how Lincoln's differed. I hadn't slept more than a hour at a time, and even that hour was filled with sounds of his raspy breathing. I held my baby every day, hoping he was strong enough to survive and that God would somehow help me understand why this innocent baby was suffering. He needed heart medications four different times a day, some of which fluctuated depending on the appointment outcomes. He was so dry and itchy (because of one of his medications), that he scratched his face until it bled, so he rocked socks on his hands most days. Nursing was difficult for him because it took so much of his energy that he was already using to live every moment. So he struggled every moment of every day. And so did we. I held Lincoln every day, not knowing what the next day would bring. He was a skeleton of the baby we had brought home from the hospital, the "healthy" baby boy we thought he would be. Hopeful that surgery was the solution, we took comfort in the promise that the hellish road would end soon. 

Despite the pain, there was so much grace. He smiled. A lot. He was a beautiful baby, adored by his brothers every waking moment.  He tolerated the doctors' appointments more than any adult would. People would call me to check in on me, not knowing I was at my breaking point, and they lifted me up. Doctors handed me Kleenex, and told me I was doing everything right; it wasn't my fault. And I would dance with Lincoln in our kitchen at night when he couldn't sleep, tears streaming down my face, hoping it wasn't our last dance together. Most of all, I was forced to live in the moment, something I had never done. Not plan ahead, not think about tomorrow, just be in the moment and take it for what it was and is- a gift. 

Looking back, I was so naive, so innocent to all that we would endure. And I am glad for that. Ignorance can be bliss, and in this case, it was. I believed we would beat the odds, and that he would be cured. That good things happen to good people. That God doesn't give us more than we can handle. Those cliches could not be more wrong. We will all endure pain, struggles, and suffering at some point in our lives. And we all look at each other's struggles and say to ourselves, "I cannot imagine going through that." But we do. We survive. And we are better because of the struggle.  

When the nurse offered for me to hold Lincoln on the morning of the 29th, time froze. My entire body went into shock. I held his dying body in my arms, and I knew the nurse didn't think he was going to survive. They had called for a second, emergency, open heart surgery, and she knew his odds. She was not ignorant. Murph and I prayed over his sweet body and soul, asking for answers, asking for him to not suffer any more. Murph prayed, "Our Father, which art in Heaven, hallowed be Thy name. Thy kingdom come, Thy Will be done, on earth, as it is in Heaven." Luke 11:2. Whatever that Will was, please end his suffering. 

And in His Will, Lincoln is here, not only surviving, but thriving. Each day, I am amazed at all that he is. He is not only a survivor, but a warrior. He battles through his doctors' appointments, INR readings, medication limitations, and physical limitations due to his medication. We watch for heart-failure signs, and trust in God's will. 

And most of all, we enjoy every moment. After the mercurial journey we have endured, I truly cherish the meltdowns and his two-year old sass because it is a constant reminder that he is trying to live life just like his brothers. And he is living it well. He is such a smart, polite, sweet, little boy. And we know, that this is God's Will. We are all stronger because of our struggles, and more dependent on God with all that we endure. And in this time of Thanksgiving and gratitude, I am so eternally grateful that God's Will was to let us enjoy Lincoln and the toddler he has become. I do not take that for granted, nor do I assume that tomorrow will be there. "Be still and know that I am God." -Psalm 46:10 is my mantra when I am scared, when I am angry, when I am lost. I know that more surgeries are in our future, that Lincoln's journey will not be easy, but I also know that He is in control. 

We are so blessed to have family, friends, colleagues, and a medical family that have helped us through this difficult journey. So many people lift us up when we are struggling- we are so thankful for you all. This week, we are celebrating His miracle, His saving grace. What a perfect time for gratitude and heart. A time to celebrate Lincoln's Rebirthday and his unique, mended heart. xoxo

Saturday, February 8, 2014

Heart Week

We have officially been heart parents for 18 months now. Or as a fellow heart mom wrote, survivors. Lincoln has been our little heart warrior without any understanding of the reality of his world. Part of me thinks it will be easier when he knows, but the rest of me is simply enjoying his oblivion, his innocence, his ignorance of his reality. He thinks his medicine is an apple sauce dessert every night where he gets to listen to birds squawk and a porcupine dance to the music. He tolerates his INR readings for a granola bar and milk. He handles his endless doctors' appointments like a true warrior- accept and overcome. He rocks his helmet like it's a hat. And he still wants to snuggle in our arms for protection and comfort. 

Linc has no idea that the last three heart appointments have been worrisome. He has no idea that dozens of specialists get together to discuss the best options for his heart. And he has no idea that his colds and stomach flu shouldn't be so hard on him. They should go away like they do so quickly for his brothers. He doesn't know that the four of us hold our breath when he goes up and down the stairs like the big boy that he wants to be. And he doesn't know that his mom cries for him because it isn't fair - that he has to endure more than all the rest of us combined. That he has to suffer through so much pain to survive. He is unaware of the sacrifices his brothers make to keep him safe and the double standards that have already begun to keep Linc safe. And he has no idea that he faces more surgeries in the future. 

Heart month celebrates his victories, our sacrifices, and his unknown future. We don't get to picture him as a successful adult yet. We live in the unknown, taking the victories and hurdles as they come. But we also know that our faith and our God has had his hands on Lincoln's tiny heart. And ultimately, it is His plan for Lincoln that will unfold. We are simply watching and enjoying the canvas He is painting. Lincoln is the most determined, funny, sweet, stubborn boy I have. He loves to dance, laugh, talk, eat, drink, and play with his brothers. He doesn't mind his INR pokes, but hates having his face cleaned. He is so extraordinary in that all he has faced -- he hasn't been "behind" a milestone since six months, which was not what anyone predicted. He is a blessing beyond words and understanding. 

This year, during heart month, we are celebrating the journey Lincoln and our family have endured thus far. And we are thankful for those to have helped us along, lifted us up in prayer, and celebrated the miracle he is. We are thankful for our heart community who helps us to realize that we have support out there. I am incredibly thankful for his heart team- cardiologists, surgeons, nurses, our pediatrician, anesthesiologists, ultrasound technicians, and Jodie, his VIP nurse. We love them all like family. They are all heroes in our household.  

To all the heart moms and dads out there, we praise you, we sympathize with you, we cry with you, and we cherish you. We are all plowing the streets for future babies with mended hearts. It is the most common birth defect in babies. So, if you want to celebrate Lincoln, the heart warriors, and heart angels this week, please wear red for them. Xoxo