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!

Tuesday, May 28, 2013

Some good news

Since January, the doctors have been warning us of a possibility of Lincoln needing a repair surgery if an area surrounding the aorta narrowed (a common complication I guess from Linc's surgeries and mitral valve replacement). We have been nervously awaiting today's echo ultrasound because of that narrowing, and to be honest, we've never had an appointment where we've walked away with good news. 

And it has been a rough month. Lincoln's INR has been completely erratic, and he has been refusing to take his meds (spitting them out or shutting his mouth). We tried sprays, pacifier medicine droppers, an elephant that makes noise, and three people holding him down. Nothing was working. Jodie, Lincoln's nurse suggested mixing it with food. We finally figured out that mixing it in applesauce works much better, and so far, as long as he doesn't see us mixing it, he is fine about it. We have also upped his dosage again, because this boy loves his veggies like his mommy! We would rather have him eating more veggies and more Warfarin than less veggies and less Warfarin. As of Sunday, he was finally in a therapeutic level, the first time since the beginning of May. Once again, we ride the Warfarin roller coaster. We also had to switch from heel pokes to finger pokes with our INR machine as the heel pokes were getting to be too difficult to draw blood. So, again, we are learning and trying to work together as a team. Starting all over, but Lincoln's bravery and strength makes it so much easier. He is such a trooper. 

So, today, I was a nervous mommy. Who am I joking- I have been nervous since January. As John Green writes in his book, Fault in Our Stars, "Don't worry. Worry is useless. I worried anyway." That is my life. Lincoln couldn't eat any solids after midnight, and any breast milk after ten a.m. The staff at Big Steps Little Feet were AMAZING and took wonderful care of my sweet boy today, giving him extra love and care since he was hungry and crabby. They had to sedate him for the Echo ultrasound, and it went really well. Dr. Joseph was there to do the first 3-D ultrasound on Lincoln's special heart. I was so nervous during the appointment because they point, discuss, and whisper in a language I don't understand. Lincoln looked so peaceful during it, which was nice to see. It was his first time sedated for it, and while it was stressful to prepare for it, he used to get so restless and frustrated during the ultrasounds. It was much less stressful for everyone once he could rest peacefully and the doctors and tech could focus on his heart. 

We finally got to hear his heart. Watching it on the screen and listening to his heart beat, I choked up. Dr. Mike always says Lincoln's heart sounds like the clomping of horse hooves on Mackinaw Island. And it does! It is a strong, unique sound that I have never heard before. And today, it was the best sound I have ever heard because it is functioning properly and strongly. Dr. Joseph said he has to review his 3-D images more closely, but that his heart looks great, and he should be fine until he is eight to ten years old (when he will need his mitral valve replaced again) A.M.A.Z.I.N.G. speechless. Utterly thankful and shocked. Blessed. 

Sunday, May 12, 2013

Mother's Day

This year, my journey as a mother has been challenging to put it kindly. Being a mommy is not just about the flowers, the accolades, or the recognition on one Sunday a year. It is about celebrating the challenges and rewards;  the tears and the laughter; and the pain and the beauty. It is the paradox where life presents the most amazing moments with the most exhausting. And this year, I have learned to see the good moments in the worst of days. I have learned to love my boys with the fiercest heart of hearts, yet also realize I have zero control in this world that we share. Just when I think I have things "under control," life slaps me in the face with a new challenge. Lesson learned, lesson learned. I have also learned that people will never understand what we are going through, and that is ok. They don't need to. It is our journey, and to those who judge, judge on. I have also learned I need help. All the time. I need help to care for my boys, to get groceries, to get to Lincoln's appointments, and sometimes just for a minute to cry. And that is ok. Asking for help makes a person stronger, not weaker. And I have learned that we are loved by so many. Not just Murph and I, but our boys. They are unconditionally loved by strangers, hospital staff, coworkers, friends, and family. What a gift for them to see the love that the world has for them, not just their parents. 

And lastly, I have learned that I am not strong. I am so weak, yet strengthened by God's love for me and my family. I am strengthened by my determination to just get through the bad times, and embrace the good moments. I am strengthened by a mom who listens to me vent daily, saves me crisis after crisis, and sits by my side every time I get more bad news about Lincoln. I am strengthened by my brother and Melanie texting me every week to check in, make sure things are ok, even when they have crazy work schedules of their own. I am strengthened by my SIL, Lisa, texting me each Friday to let me know we have both survived another crazy week. I am strengthened by my work family, who every day, stop by to ask how Lincoln is doing and how I am doing. I am strengthened by my "big" boys, who live in their own world, still oblivious of the catastrophic events that have taken place in our lives. And I am strengthened by Lincoln's determination to beat the odds, to live life fully, and to love the world more than the world loves him. 

My world may appear tragic to some, but truly, we are blessed.  We have three beautiful boys who are kind-hearted, soulful, and love each other to pieces. And they humor me that I want to capture every moment with pictures, to remember the good days and the bad. The small messes and big catastrophes. Motherhood is about the journey of interruptions, failures, and milestones just as much as it about the smiles, giggles, and kisses. 

And on this Mother's Day, I am humbled by the lessons I have endured this past year, but also by how amazing my mother truly is. She has taught me the true essence of strength, love, and devotion to what is truly important in life. She has taught me to laugh at all of the ignorant people in the world who say the most unimaginable things to a mom of a CHD baby. She has taught me to endure all of these experiences with grace. And she has taught me that unconditional love, consistent parenting, and loving all of my boys for their unique personalities is the most powerful, joyful reward of parenting. So thank you Mom for all that you do. We love you so much. 

And thankfully, after sixteen years together and almost ten years of marriage, Murph and I are in this together. We have our good days and bad, like any relationship, but we have discovered our strengths and weaknesses in this journey. He keeps me calm when I am anxious, and I calm him when he is stressed. We seem to find our strength when the other one is weak. And we love each other unconditionally and deeply, which is one of the best gifts we can give our boys. He is an amazing role model to our boys, showing them how to be a devoted husband to their wives some day.

So on this Mother's Day, I want to thank each and every one of you for helping me through this last year. It has been a tumultuous journey, but we have survived only with your love, prayers, and support. xoxo