Our Warrior's Battle Against CHD

Our Warrior's Battle Against CHD

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