Our Heart Warriors
During the 2022 year we were able to help five families who have been affected with CHD and we couldn't have done it without our community, those who support our mission and these wonderful heart families that we have met along the way. We have been able to help these families with living expenses, every day needs, clothing, blankets, gas cards and food.
Hi, I’m Lincoln! My momma calls me Big Boy Lincoln or even Stinkin’ Lincoln when it’s time for a diaper change because apparently I can really clear a room. Anyway, enough of the diaper talk; I’m here to tell you my story. I was born on 8/3/21. The doctors knew I’d need some help with my heart. They found that I had organs in different places in my body (heterotaxy) including my heart on my right side (dextrocardia) and my heart pointed the wrong way. It was really hard for them to understand how my heart was functioning while I was inside mommy’s tummy. I guess you could say God plumbed my body pretty special. So there was only one thing the doctors knew for certain; I’d need at least 1 heart surgery after birth.
This was a big shock to mommy and daddy so they prepared as best they could, with the love of family, friends and my big 1 (almost 2) year old sister at the time. They made arrangements job-wise and financially to ensure they’d be available to be by my side as often as possible. When I decided to come meet my mommy and daddy, it was only 1 week early.
And boy did I surprise a lot of doctors. I never told them when I was in mommy’s belly that I also have lung disease. Doctors scratched their brains trying to figure out why I kept getting sicker and sicker the first couple days of life. They even had to prepare my mommy and daddy that I may be going to heaven. They were so scared but I knew I wanted to stay with them longer so I kept showing them more about me. After lots of testing (including genetic testing) they found out I have PCD (Primary Ciliary Dyskenesia). PCD is a cousin to cystic fibrosis, my cilia do not move therefore I need treatments and lots of coughing to keep mucus from building in my airways. This diagnosis helped doctors to start understand why organs may have ended up in different places in my body (also missing one, my spleen!) as I was formed in the womb.
Next was to figure out this crazy plumbed heart of mine. Boy did I have a lot going on. Beyond my heterotaxy and dextrocardia; Pulmonary valve atresia, single ventricle, and MAPCAs were some of the things they found. With this new knowledge, my doctors reached out to Lucile Packard Childrens Hospital at Stanford in Palo Alto, CA to see if they would take on my surgery since it was not able to be performed here at home. They said yes!
After 75 long days in the NICU, mommy and daddy brought me home to meet my sister, grandparents, aunts, uncles, and friends. It was so fun seeing everyone they told me about.
My mommy and daddy were rockstars waking up at all hours of the night for months on end. They always made sure I had my meds, treatments, oxygen, milk, and lots of love! I sure didn’t make this transition easy on them, but boy did they do great! Even my big sister Korah who was used to being an only child did a great job with me coming in man of the house. She walked around calling me Buddy for a few months which I thought was weird at first but then figured out it’s because she couldn’t say my name yet, so I allowed it.
Fast forward to January 2022, daddy drove us all down to Stanford where we stayed until April while I received my first heart surgery; a Unifocalization (combining my MAPCAs), building pulmonary arteries, and placing a central shunt. I made so many friends and my parents learned so much about how to care and advocate for me. I’m so proud of them!
Since then, I’ve had another trip to Stanford and will continue to every 6 months until they find it’s time for my second heart surgery to finish off corrections of my heart. Mommy says we’re heading there in 1 month for another check.
My life has been pretty hectic, lots of ups and downs, but I’m a fighter and this is only the beginning! Thank you all for your love, support, and prayers. Bye-bye for now!
Tylers mom was six months pregnant when she learned her son, had hypo-plastic left heart syndrome. This is a heart defect that makes it difficult for blood to flow through the body properly. They were told if she didn't immediately have in-utero surgery, her son's survival rate was below 10%. They were able to go to Boston Children Hospital where they performed a surgery in which they inserted a tiny balloon in his valve to allow for blood flow. The surgeries increased Tyler's survival rate to 60% and he was born in May 2018. He's had six surgeries since birth, and continued to thrive.
In March of 2022, Tylers parents were told that he was experiencing heart failure, along with a list of other problems that would eventually follow. Tyler was able to have surgery but succumbed to his heart disease days before his fourth birthday.
We will always keep Tyler and his family in our thoughts and prayers.
During Heart Month (February 2023) we were able to deliver 12 gift bags to the PICU, where they have been handed out to families that are inpatient with children who have congenital heart disease. We know of at least five patients that have received these bags and that couldn’t have happened without the support of our community, the sponsorships we are given, the donations that come in and the outpouring love and support from those who attend and are a part of our annual golf tournament, so thank you from the bottom of our hearts!
The bags were filled with blankets for the parents, journals, gift cards to Thomas Hammer (the coffee shop in the hospital), lovies and of course blankets for the children as well. We want to make sure that the families have something comfortable while they are there. The journals are something that Alex and I hold very dear to our hearts, as it was something that Alex wrote in, every single day McCoix was inpatient. The journal is something we can always go back on an see just what was happening while we were there, because a lot of the time it was a blur…thank goodness for pictures. We also included the story of McCoix and what his mission is all about in hopes to help those that may need it.
Along with the stories above, we have been able to help three other families, two being in the 2022 year and one at the beginning of this year.