“No Distance Too Far: Lincoln’s Lifesaving Journey”
Written by Laura
Hi. We are the Apel Family! Lincoln is our Heart Warrior. I’m Laura, Lincoln’s mom. Drew is his dad, and Addison is his big sister.
During my pregnancy in 2022, we were living in Key West, FL. At 26 weeks pregnant, I went to Advanced Maternal Fetal Medicine in Miami, 3.5 hours away, as a precaution (I was 37 years old), and found out that my baby boy had a Congenital Heart Defect. That same day, I was referred to a fetal cardiologist who confirmed that he had CHD. Throughout the remainder of my pregnancy, I made frequent trips to Miami to see AMFM, the fetal cardiologist, and a new OB. The hospital in Key West was unequipped to handle the level of care he would require, so delivering there was out of the question. The plan was to deliver in Miami near the children’s hospital around 39 weeks. I was nervous that I might go into labor early and be stuck in Key West while my baby was flown to Miami, so I went to Miami a week before my scheduled induction.
Lincoln was born on June 29, 2022, with Tetralogy of Fallot, Pulmonary Atresia, and MAPCAs. He experienced a lot of difficulty breathing, was intubated for quite some time, and was later diagnosed with tracheomalacia, chronic lung disease, global developmental delays, and an atrophic kidney.
Addison was only 19 months old when Lincoln was born. She was still a baby herself, so during the first few months we rented a house near the hospital and had different family members and friends stay with her. This allowed us to take breaks from the hospital to see and spend time with her, but continue to be by Lincoln’s side through an incredibly difficult time.
At one month old, Lincoln had his first open-heart surgery at Nicklaus Children’s Hospital in Miami. A Mee Shunt was placed to temporarily treat his pulmonary atresia by redirecting blood flow and promoting growth of the small pulmonary arteries. After multiple failed extubation attempts, we had to make a big decision. At two months old, he had a tracheostomy and gastrostomy. After these surgeries, we expected to go home soon, but he continued to be unstable.
My husband and I slept in his room every night. I can still recall the horrors of waking up around 2 AM one morning to see his pale, limp, and lifeless body as a team of nearly a dozen people worked on him. I remember someone noticing us and immediately being led out of the room for what seemed like forever. For hours and hours, we cried, prayed, and begged God not to take our son away. He answered our prayers!
After 105 days in the Cardiac ICU, Lincoln went home for the first time. We had to be cautious, but we tried to give him as many typical experiences as possible. Despite our best efforts, he was very frequently readmitted to CICU for respiratory illnesses. Our family experienced many challenges and was often separated. My dad drove Lincoln and me to Miami for nearly all of the admissions. I could not drive Lincoln to Miami alone because of his high needs. I sat in the back seat to suction his trach, manage emesis events, and administer meds and feeds via g-tube. I stayed in the hospital with Lincoln, while Drew remained in Key West to work and take care of Addison. During long admissions, Drew and Addison would visit on the weekends. When Lincoln was ready to be discharged, my dad would return to pick us up. Lincoln also traveled via Life Flight helicopter and ground ambulance.
Lincoln was referred to Lucile Packard Children’s Hospital at Stanford in Palo Alto, California. While there are many excellent pediatric cardiology teams throughout the United States, Stanford specializes in TOF/PA/MAPCAs. He was supposed to go for an evaluation after several months, but was rescheduled multiple times due to respiratory illnesses. If a child even has one sniffle within 4 weeks of surgery, they are rescheduled. In May 2023, after living in the ICU for a month in Miami in an effort to be well enough for travel, we traveled to Stanford via medical flight, but the team determined he was not well enough for surgery. This was a huge disappointment!
A year later, he was much bigger, stronger, and healthier. This time, the insurance company would not help with transportation from Florida to California, and a commercial flight was too risky. He was fully trach, oxygen, ventilator, and g-tube dependent. I called many of the organizations that boast of assisting seriously ill children seeking medical care, only to be turned down because they deemed Lincoln as “too medically complex”. Finally, I found a wonderful non-profit organization, AeroAngel, to provide a private flight for us to California.
In March 2024, Lincoln returned to Stanford and underwent a 17+ hour full heart repair surgery, including pulmonary artery reconstruction and unifocalization of the MAPCAs. We spent nearly 2 months in California before returning home.
Several weeks after surgery, Lincoln was able to breathe on room air and no longer required oxygen or a ventilator. This was truly a life-saving and life-changing surgery!
Once we finished that huge feat, we knew it was time to relocate. It was difficult logging all those miles between Key West and Miami, and Key West simply did not have the resources to properly support Lincoln’s needs. He was a client of Early Steps, which provides early intervention services, but finding providers seemed impossible. We had to drive 1 hour and 15 minutes each way for 1 hour of PT services per week. This was not enough, and he also needed OT and Speech. We fought for Lincoln to live, and we wanted to continue to give him opportunities to reach his full potential. While we were in Key West, we had my family’s support. My mom learned how to handle the ventilator, oxygen, trach, suction, g-tube, and feeding pump, and watched him while we worked. Relocating would mean we needed to find someone to watch him while we worked, and regular daycares could not accommodate his needs. Although Miami was a huge part of Lincoln’s progress, we had no desire to live there. UF Health Shands Children’s Hospital in Gainesville was our first choice. I called the medical daycare in town, but they wouldn’t even talk to me because we didn’t have Medicaid. To get Medicaid I was told to quit my job teaching public school, get rid of my car, and divorce my husband. God had brought us this far, so we were not inclined to do anything deceitful. I continued to call all the medical daycares around Florida until I found Tender Care Medical Services. The administrator told me exactly what to do to acquire Medicaid the right way, so he could attend. Lincoln has been attending there for nearly 2 years and has grown so much thanks to the dedicated nurses and OT, PT, Speech, and music therapies.
In March 2025, Lincoln returned to Stanford for a one-year post-op heart catheterization and received a good report. He was also decannulated and no longer needs a trach.
At some point early on in Lincoln’s heart journey, I heard about Heart Heroes and filled out the application for him to receive his cape. In March of 2023, I learned that Heart Heroes hosts Superhero Heart Runs in Omaha and Des Moines. Before having children, I made a personal goal to run a race in all 50 states, so although we live in Florida, this excited me. I hadn’t run a race in either Nebraska or Iowa. I immediately had a vision of attending one of the races and pushing Lincoln across the finish line in his Heart Hero cape. I was not able to realize this dream for a while, as it was not safe for him to travel via commercial flights, but this dream became a reality in October 2025. We participated in the Omaha Superhero Heart Run! I pushed Lincoln in the 5K, and he ran in the Kids’ Mustache Dash. This event was amazing and such a special experience for us.
Lincoln’s journey has not been easy, but he has shown so much strength and determination. God has been faithful, led our family each step of the way, and continues to reveal Himself through little Lincoln. We are so thankful for all of the wonderful people and organizations that have helped us along our way.
There is always HOPE!