Nicole was told when Kyler was 4 months old that he would never lead a “normal” life. That, ” he would never walk, talk, eat by mouth, go to a regular school.” Kyler has proven them all wrong! Here is his story:
Kyler was born on July 19th, 2007 weighing in at 6lbs 2oz. I knew something was wrong throughout my whole pregnancy, despite the doctors telling me the only thing wrong was IUGR. During my 20 week ultrasound, the tech was going over all his beautiful organs. His lungs were developing well, his intestines looked good….but she was having a hard time seeing all four chambers of his heart. She was pushing on my belly, trying to get the pictures she needed, but to no avail. I was officially freaked out, but she said the radiologist would look it over and get back with me. I would be going in for regular ultrasounds to measure him and ensure he was growing, but they would never look at his heart again, because the radiologist said he saw all four chambers. I’m not sure how that happened, because he was missing most of the left side and would be born with HLHS.
We knew he was going to be small when he was born, but little did we know he was going to be fighting for his life as soon as his umbilical cord was cut.
I remember laying on the operating table, wondering why they hadn’t brought my son to me yet….. when my husband asked if everything was okay. I made him leave my side to go check on Kyler across the room. A few minutes later, the nurse brings him to me for a kiss and says she needs to take him to the nursery because she can’t get his oxygen to stay up. I told my husband, Rayan, to go with him and I yelled, “CALL HIS PEDIATRICIAN, NOW!”
I knew something was wrong. I felt it my whole pregnancy, but thought it was something wrong with me since all of his ultrasounds were “okay.” After sitting in the recovery area, for what seemed like and eternity, I had the nurse call the nursery to check on him. They were still working on him and as soon as I got back to my room, our amazing pediatrician came to see me.
She sat next to me on my bed, while my best friend, Amber, held my hand. She proceeded to tell me that they had done an echo and x-rays of Kyler’s heart…. and that he was born with a congenital heart defect called Hypoplastic Left Heart Syndrome. My heart broke into a million pieces as I sat and listened to what she was trying to tell me.
Kyler was being prepped for Lifeflight to come get him and take him up to Primary Children’s Hospital. He was very sick and it’s good that this was caught when it was after birth….. because a few more minutes without the drug to keep his PDA open (the conduit that runs between the left and right side of the heart that allows the mother to help pump blood for the baby…. the only thing that kept him alive inside my belly), and he surely would have died. It took them what seemed like forever, to get him stable enough for the 20 minute flight downtown. When they wheeled him by my room to say goodbye, he was intubated with wires all over his little body. All I could do was cry.
Rayan’s counselor ran him to Primary to be with Kyler, as I still couldn’t feel my legs from the c-section I just had. I sent Amber home a little later and just sat in the dark in my room. Rayan called me from the hospital, after talking with the doctors. We had a decision to make with our son. One that would be life or death and that NO parent should be faced with making. I was told that I needed to get out of bed as soon as my legs were capable and get walking…..as I was needed at Primary the next day. They weren’t sure if our son was going to make it and we needed to sit down with the doctors as soon as possible.
I was bleeding internally (a blood vessel got missed during surgery and my side looked like I was brutally beaten from my breast to my groin), so I was given a pain pill and walked out of the hospital to my friend’s car.
Once at Primary, we were able to spend a few minutes with our son before the doctors came in and sat us down. One explained the seriousness of our son’s defect and the fact that he was, essentially, missing half his heart. He told us that we had 2 choices. 1) We could take Kyler home with us today, to die. He probably wouldn’t last more than 48 hours and his heart would just eventually stop beating. Or 2) we could opt for beginning the stages of heart surgeries that could possibly help him live a long life. It was something we didn’t have to consider and I said, “When will his first surgery be?” We had to give him a chance at life!
His first surgery was scheduled for when he was a week old. The morning he was to be taken into the operating room, we were allowed to hold him, for the first time since he was born! What a bittersweet moment that was.
Thus beginning Kyler’s crazy heart journey…..
First, I must explain the details of open heart surgery (OHS) on a 7-day old baby. Your heart is about the size of your fist. Now, think about the size of an infants fist…..yeah, their heart is that little. YET, kids born with HLHS/HRHS only have about HALF the “normal” sized heart. Let your mind wrap around that when you hear of a baby in open heart surgery and how AMAZING these surgeons truly are!
After his first OHS, they couldn’t close his chest. He had a piece of tissue in his heart that, when pushed together at closing, caused blood flow to be cut off to the lower chambers. Everyone has this flap in their heart and it NORMALLY helps to prevent blood from backing into the upper chambers of the heart. Kyler’s heart was improvising and growing it from one end to the other. They attempted to balloon it open in the cath lab, but that didn’t last long and he was taken back into the OR to cut it open.
Because he had needed two OHS in such a close period of time, they left the pacer wires in his heart for longer than what they usually do. Doing this caused clots to form around the wires and when they were pulled, the clots started breaking off and causing damage to his brain and other parts of his body where they were now lodging. I’m the one who caught his seizures while sitting next to him. I used to drop my older kids off to school and my aunts house and then I would sit with Kyler all day while they were in school.
While talking with him one day in August, I noticed that he wasn’t looking AT ME anymore and it was like he was looking THROUGH me. Then I noticed that his hand was twitching. I grabbed it, thinking it was just a muscle spasm, but it didn’t stop. I jumped up and grabbed the nurse, who was talking in the hall (2 feet from his bed) to the charge nurse. They both came to his bedside and proceeded to call for the attending doctor and nurse practitioner. The attending doctor came rushing over and asked me to move aside because he was seizing. I yelled at her and told her that he was not seizing and he had already been through so much, this couldn’t be another thing on top of it all. She grabbed my shoulders and looked me in the eye, telling me she understands but she needs me to move please. I step aside as they start trying to figure out what is going on. A few hours later, they would see those awful clots, flipping back and forth in his heart.
He was taken for an MRI the next day…. as he went downhill, fast. He suffered 2 strokes and several clots lodged themselves in his left leg. Thankfully, it didn’t impede his blood flow to his leg. Many other small clots were around his body, but they felt they would just be absorbed and there wasn’t a reason to worry. The ones we needed to focus on was the ones still left in his heart and the ones that hit his brain. They started him on Heparin, but had to go slowly because of the risk of his brain bleeding worse.
Rayan and I talked about things and we decided to ask the doctors if they could just go in and cut the clots out. We knew it was risky, but no more do than running Heparin and the issues of a serious brain bleed. The doctors discussed it and told us that they would do that….. but that Kyler was VERY sick and we could lose him. I just knew that if they didn’t go do this, his brain would have ended up damaged severely. The morning of surgery, the anesthesiologist came to talk to us. He told us that because Kyler was so sick, we should prepare to lose our son during surgery. I looked him in the face and told him that he wasn’t God. That if God called our son home, then we would deal with that, but to go do his job and leave the life and death in God’s hands. We walked side by side, down the hall towards the OR, holding our son’s hand. When we got to the doors, I bent down and told him, “Baby boy, if you’re tired and cannot fight anymore, it’s okay to go home to Jesus. Mommy and Daddy love you so much, and know how hard this fight has been.” We kissed him on his cheek and watched as the doors closed behind them.
A few hours later, he made it out of surgery and they didn’t even need to give him any blood transfusions!
Things started looking up from there. When he was 8 weeks old, he went in for a g-tube placement, as being intubated and extubated so many times caused him to suffer a paralyzed vocal cord and he couldn’t eat anything without it going into his lungs. The day after surgery, he popped a stitch and ended up needing to be rushed back into surgery to have his intestines put back into his belly.
If there was one thing we learned on this journey it is the fact that Kyler played by his own rules. He was the talk at many medical conferences and everyone knew him.
When he was about 4 months old, we went to his follow up neurology appt. At that appointment we were told he would never walk, talk, eat by mouth, go to a regular school. He would never live any semblance of a “normal” life. I left her office, after some choice words, and told her, “He is 4 MONTHS OLD, how dare you give him such a grim outlook.” We never returned to her office again.
He started growing and learning new things. Of course he was always a little “behind the norm,” but any and all advances forward were blessed and welcomed. He learned to say a few words and we got him fitted for a wheelchair when he was almost 3. We got devastating news, not about Kyler this time. My children’s father, (my husband that I had been separated from since Kyler was 4 mo old,) took his own life. It was heartbreaking and something I never wanted to watch my kids endure. We needed to do something together, as a family, to help heal. We planned a trip. Kyler apparently had his own plans for this trip and decided to stand up in the middle of the floor and take a few steps. It was bittersweet! We donated his wheelchair to Shriners and pushed him to walk.
Shortly after we got home, Kyler would undergo his 5th open heart surgery in June of 2011, just before his 4th birthday. This one was the Fontan and from there he was supposed to make leaps and bounds. We were never told about all the we needed to be wary of….like Liver Disease or Protein Losing Enteropathy, (which were developed down the road.) Two years passed he started adaptive Kindergarten when he was 6, but by Christmas break he was able to move into a regular Kindergarten class. However, if it weren’t for my amazing fiance, Jim, and him pushing me to enroll him in school, Kyler would have not started kindergarten until he was 12!
I’m grateful for when Jim and his boys walked into our lives and the way he keeps me grounded. He loved school in the beginning and had the cutest little girlfriends that absolutely adored him.
When he was 9, he developed that Protein Losing Enteropathy (PLE) and was placed on the heart transplant list November 2016. His new heart came a lot quicker than we all anticipated. We got the call on March 22nd and his beautiful donor heart started beating in his chest at 2am on March 25th. After 12 long hours of waiting for updates and praying for a good outcome, I could breathe a little.
Little did we know, during the transplant, he had suffered a serious brain bleed that would affect his mental health in ways we couldn’t imagine. My little boy went into surgery a happy, smiling, fun loving kid and came out an angry, violent, suicidal, anxious kid. It broke my heart into a million pieces. After we got him home, he would have these horrible meltdowns where he would slam his head into anything and everything. He would bite, scratch, kick, headbutt…..anything he could to hurt himself or me. I had to restrain him and we would both just sit and cry together.
Fast forward 2 years and he is starting to look forward to things. He is going into 6th grade (he will be homeschooled for the first little while, until we have a plan in place for the year). He loves to swim and we have been fundraising to finish paying off his service dogs training. His favorite things are Five Nights at Freddy’s, video games and the dreaded YouTube videos that mom cannot stand! He loves playing with his (almost 7yr old) niece and his older brothers and loves staying the night with his Uncle Jason.
He is at that point in his life where he is starting to realize he is different from other kids. His Cerebral Palsy makes it difficult for him to run or walk long distances and his anti-rejection meds make him tired a lot…..they also cause severe pain in his legs and insomnia. Every day is a new challenge, but we are beyond blessed to have him here with us and we just roll with the punches. On bad days we veg and watch cartoons together and on good days we go have fun.
No matter what life throws at us, we know we have each other and some days, that’s all we need!