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

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

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!

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. 

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 

First weekend home

Our new life. I feel like we are bringing Lincoln home for the first time, again. Starting over with a new baby. And it has been joyful, exhausting, stressful, and soulful. It has been eye-opening and God-filling. I am thrilled to have him home and watch the big boys worship him in small moments and big ways. We are blessed. And he is readjusting to his new life, new heart, new medications, and a loud house :) The cardiologists call the PICU  "Vegas" because of its fast pace and the lights are always on. Lincoln's nights and days are all discombobulated, but that will work itself soon I'm sure.

This experience has taught me so many lessons. I knew I had amazing family members, friends, and colleagues before, but I now truly understand the powerful, unconditional compassion, concern, and love that exists there. And it has made me a stronger, better person. Thank you to all of you who have shown us the power of prayer. People who don't even know us have written thoughtful posts and prayed for our baby boy- that to me, is true humanity.

Teri Harmon came down to the hospital to teach me a stress-relieving TRE session -that is an altruistic gift that has helped me to deal with all of the stress and trauma. Tuesday after the first surgery, I joked with her that I hadn't lived trauma like most. Little did I know, a few days later I ate my words! Since my first two sessions, I have been using that technique to relieve my stress and pain. I highly recommend it for everyone and everyday stress.  Teri, you are the best!

This upcoming week begins our new marathon of appointments, education, and lab work.  It is a lot to digest, and pretty scary. The INR levels are so important in a little man of eleven pounds, so we will have to monitor him very closely. Every time he grows, takes medicine, starts food, or gets sick, his levels fluctuate. And each extreme is serious. If it is too low, he runs the risk of a stroke. If it is too high, we have to have him admitted into the PICU, reverse his INR levels, and hope there is no internal bleeding. But he will be ok. We trust and have faith that we can get through this, and it is a much better world than our prior situation of heart failure. We just keep thanking God that he is here with us.

And to all of you who have been "walking in our shoes" (thank you Atticus Finch) and have been there for us - thank you! Never did we imagine we would be in the hospital just shy of three weeks! We so appreciate the meals, treats, shopping, errands, decorating, laundry, visits, and offers to help. And we are forever indebted to the staff at Big Steps. The big boys have so much fun there, that it was an amazing diversion from the disconnect at home.  In Jackson's language, " Big Steps. Fun. Friends." We are blessed with a loving circle of friends and family. Thank you so much!

Home

Thank you all for your support, love, generousity, and sweet tokens of kindness. We are blessed by the outpouring of love. And we are thankful to be together tonight, back into the chaos and fun of three boys five and under :) we have a long journey ahead of us, but it is worth every step. Xoxo