Luke's Story

I was supposed to be born on New Year's Eve 2021, but on December 3rd I decided I was ready for the world! I was born at 6:38pm on a Friday. The first thing I remember were a lot of bright lights and hearing my dad telling my mom that I was a boy! The doctor quickly put me in my dad's arms and I immediately knew I was home. But for some reason, I had some trouble breathing. So the nice nurses got me all cleaned up and rushed me down to the NICU to figure out what was going on.

In the meantime, my mom needed special care too. She had some bleeding going on in her tummy after they pulled me out, but the awesome doctors got her all fixed up. While I was getting some help in the NICU, my mom was getting moved to a room where she could relax from the long day. Just before my dad was about to come see how I was doing, my mom fell unconscious and started choking! My dad ran out of the room yelling that my mom was choking and needed help!!! In a matter of seconds, her room was full of doctors and nurses trying to figure out what was going on. The doctors quickly realized that my mom was in real trouble and they needed to go back in her tummy to see what was making her sick. They did an emergency 4+ hour surgery in the middle of the night to save her life. My mom lost a lot of blood and needed lots of help to save her life. I'm so thankful for all the nurses and doctors because they were able to take care of my mommy and fix the bleeding in her tummy again.

Once my daddy knew mommy was okay, he came down to see me. I wasn't doing very well. I was put on a ventilator because I couldn't breathe on my own. They gave me all kinds of medicine, put all sorts of needles in me, and hooked me up to all kinds of machines. I remember my dad telling me that my mom was okay, but she had a very scary moment. He told me she was in the ICU recovering and wasn't able to come see me for a few days. I remember him telling me every time he came to see me how much she loved me. After 3 days, my mommy was able to come and see me!!! I missed her so much! After many days of trying to fix my lungs, help my breathing, and long nights of my daddy sitting by my side in the night, someone finally came to look at my heart. It was then we found out I had a large hole in my heart called a VSD (ventricular septal defect). To fix the hole in my heart, I needed to have open heart surgery.  I'm not going to lie, I was scared, but I knew I had to be strong for my mom and dad because I could see how much they were worried about me. I knew I had to become a warrior and fight for my family! Over the next 47 days, I fought to get big and strong so I could go home from the NICU. Because of the hole in my heart, I was breathing so fast that I couldn't drink from a bottle. The doctors decided to put a tube in my tummy so I could eat without having to swallow. Once I had that surgery, I knew the next thing I had to do was go home to get strong for my BIG surgery and to see my dog Emma!

On January 19th, I was finally able to go home from the hospital! My mom and dad had to give me 11 syringes of medicine a day, they had to learn how to care and clean my g-tube, which was very nerve wracking, made sure I got my medicine every four hours, and helped me get strong. After being home for a month, I got the news that I was big and strong enough to have my open heart surgery on March 7th.  While I was excited to get my heart fixed, I was really nervous and so were my mom and dad.

My big day had finally come. We woke up very early in the morning to take me to the hospital and get ready for my surgery. I kissed my mom and dad and told them not to worry because I had the coolest, smartest, most amazing surgeon in the whole world, Dr. Maxey. The surgery had some risks, there was a chance if Dr. Maxey accidentally hit a part of my heart that was hard to see, I would need a pacemaker for the rest of my life. After about 3.5 hours of surgery, Dr. Maxey put me all back together. I went up to the CVICU to recover and Dr. Maxey went to tell my mom and dad that the surgery couldn't have gone better and he knew for a fact that he didn't hit that spot in my heart, so no pacemaker for me! After an hour or so, my mom and dad were able to come see me. I was in rough shape. I had tubes in my neck going to heart, needles all over of my arms, more tubes going from the bottom of my chest to my heart, countless wires, and machines helping me recover. I felt like I had been hit by 100 school buses at the same time. Once again, I could tell it was really hard on my mom and dad to see me this way, so, I knew I had to put my warrior hat on and get better fast. The first night was really hard, but after that, I was starting to feel better by the minute. Slowly they started taking things out of my arm, tubes going directly to my heart, unhooking me from machines, and after three days, I was back on my own and drank my first bottle all by myself! I was FIXED!!!

Since then, life has been great! I'm off all my medications, I learned how to drink a bottle, got my g-tube removed, I turned 2 on December 3rd, and I'm running around everywhere! I'm so lucky to be completely fixed. No limitations, no medications, I'm whole!  I'm the luckiest little boy and I'm so grateful for all the love that has been passed on to me.  I know not all warriors, no matter how much they fight, are as lucky as I am.  That's why it's so important to me to make sure other babies and families know they are loved and not alone as they go through some challenging times.