February 7-14 is Congenital Heart Defect Awareness Week. To help raise awareness, spread knowledge and share the effects of this disease, Jayme of The Paper Deer Photography Blog, Christie of Lemon Squeezy Home and Kierra of The Irvine Home are each sharing one story of a child with CHD every day to showcase the trials, triumphs, journey and heartache of this devastating disease. We invite you to read and share this project to further our voices. Thank you. #FacesofCHD
April 20th, 2013 was one of the happiest, scariest, & most sacred days of our lives. It was the day our lives were forever changed in ways we never imagined. We welcomed the most perfect, tiniest, sweetest little boy we had ever laid eyes on. Four weeks earlier we were shocked with the devastating news that our little boy would be born with a very critical heart defect called Hypoplastic Left Heart Syndrome. That basically meant he would be born with half a heart, missing his left side (ventricle).
His birth was different than most. As excited as we were, it was a bittersweet thing to bring him into the world because we knew he was safe inside me and life was only going to get tough for him once he entered the world. We were so relieved to hear his sweet little cry and wanted nothing more than to wrap our arms around him and never let go. Unfortunately due to the severity of his defect we weren’t able to even touch him. We got one quick peek at him before he was passed through the window to the NICU team. Within the first five minutes of his life, he stopped breathing. That was only the beginning of his long, hard journey, but Tytan was a fighter. He was ready to give it all he had.
The first week of his life was full of ups and downs. It seemed to be one thing after another. Once he was stabilized he was transported to Primary Children’s Hospital. Tytan really struggled to breathe and was intubated on Day 2. He also had a small brain bleed, pneumonia, and was given a blood transfusion within his first few days. His first open heart surgery took place on his 6th day of life. We were able to hold Tytan for the very first time the morning of surgery. Nothing like a team of doctors and nurses telling you “You need to hold your baby because they may not survive surgery, and this could be the first & last time”. We were able to snuggle our little man for close to an hour before we handed him over to a team of skilled surgeons.
Tytan was in surgery for 8 hours that day. So many emotions and thoughts flooded our minds during those hours knowing his heart had to be stopped to work on it. When his surgeon came to the waiting room to talk with us, I wanted to hug and kiss the man for saving my baby. It was because of him we were able to have our baby alive and with us for a little longer, and hopefully a lot longer.
Recovery in the ICU was hard, hard on him and hard on a parent to watch their child have to fight so hard. We were so fortunate to be surrounded by a wonderful team of doctors and nurses who celebrate every little feat with us. After about one month post operation, Tytan was finally released from the hospital and for the first time we were under the same roof as a family of four. As excited as we were, it was terrifying to bring home a medically fragile child. We brought him home on oxygen, a feeding tube, a monitor, and too many meds to count. We were constantly untangling cords, refilling feeding bags, giving meds around the clock, and being woke up to alarms at least every hour. This life that was once so scary soon became a new “normal” for us, and we embraced every moment we had together. We spent the next couple months together at home playing, loving, learning, keeping him healthy, and gaining weight for his next upcoming open heart surgery. Soon the tubes started to disappear one by one, and that medically fragile boy looked perfectly normal and healthy as can be. To see him no one would know he had half a heart, and his poor little heart had to work twice as hard to keep up. Tytan was a happy, loving, & perfectly content little guy. He greeted everyone with open mouth grin and sparking blue eyes. His big sister absolutely adored him and he loved her right back. Tytan loved to be rocked, go for walks, and bath time. We spent our days at home usually doing nothing more but cuddling, playing, & the bare necessities. Life felt so normal, almost too normal.
That normalcy came to an end when our world was rocked upside down the first week of September. He was scheduled for his second open heart later that month, and he had a cardiac cath procedure the week prior to this event. Tytan was a fairly good sleeper and exceptional baby. He seldom was fussy, but this particular night he just wasn’t feeling so hot. He didn’t want to sleep, and I remember all night just begging with him to sleep. He was up around 7:00 A.M that morning, and we were rocking in the recliner. I stood up and Tytan began to projectile vomit and soon after turned blue. I immediately hooked him to his monitor and his heart rate read 240+. It didn’t take long before our little guy started to go limp. My husband held his little fragile body while I called 911 and told them to get Life Flight coming because our little man needed to get to Primary Children’s Hospital ASAP. We knew it was only a matter of time before that little heart would stop, and we were prepared to perform CPR if needed. Thankfully, we were flown by Life Flight and made it to the hospital. He was taken directly to the Cardiac ICU where they were able to restart his heart. It is a medication that literally makes the heart completely stop and start back up. There is nothing scarier than watching your baby’s heart stop and hit 0 on the screen. At that time we learned Tytan had another heart condition that was life threatening as well. His heart electrically had multiple pathways which allowed his heart to beat at ridiculously fast speeds- 200+. There was no way his half of heart would be able to continue to do this, so the team of doctors felt like Tytan need to have another heart surgery called a cardiac ablation. They would go in and ablate (burn) all the extra pathways in his heart so it was unable to take them.
On September 12th, 2013 we handed our happy, smiling, hungry little boy once again to a skilled team of doctors. Nine hours later instead of a happy report, we heard “CODE BLUE”. We ran down and were immediately met by hospital staff. I vividly remember asking a doctor, “Is he gone?” He replied, “They are doing everything they can to bring him back” I immediately fell to the floor and started begging with my Heavenly Father to save him and not to take him yet. I was able to go in the OR room and watch my poor little baby’s limp body receive chest compressions by an assembly line of doctors. After 55 minutes, they got him hooked up to a heart and lung machine (ECMO) and the only way he was still alive was through this machine. It acted as both the heart and lungs for the body. Later that night we were able to see our baby boy, but it wasn’t the baby boy we handed over earlier that day. He was cold, purple, swollen, and completely lifeless.
Over the next couple months our lives were truly a living hell. We watched our little Tytan suffer more than a parent can comprehend. It was always one step forward and two steps back, but it was that one step forward that kept us fighting. His heart continued to go into SVT and beat 200+, so they would have to shock him multiple times a day. He had seizures, brain bleeds, bed sores, and countless other problems. From the very beginning we were told it was a matter of when not if he would need a heart transplant. His time came sooner than expected, but we accepted it and immediately listed him for a new heart. He was listed 1A, but he was soon removed from the transplant list due to much of his brain being dead from the lack of oxygen he received when he coded. This wasn’t discovered until they did an MRI. We continued to stay in the ICU over the next couple months doing therapy hoping to get to the point where we could get him home. Things were going relatively smooth, but that was short lived. We were faced with every parent’s nightmare. Dr. Vernon, the ICU doc, pulled me aside into a room across the hall. I was all alone and I heard the words no parent ever in their life wants to hear. We have had many hard talks, but never had these words been said. The doctors had fought so hard for Tytan because of me. They knew I wasn’t going to give up and they could see the hope, hurt, and desire to have my son so badly. He began to tell me that Tytan’s heart is failing and failing fast. His body was not receiving the blood supply that it needed to keep surviving. The dreaded words came…. Teisha, I know you want this boy more than you want your own life. You both have fought a long hard battle. As a team we have worked so hard to get your little boy better. In fact, we have tried harder and longer than we do with most because of your drive and determination, but Teisha THERE IS NOTHING MORE WE CAN DO. You need to get your husband and whatever other family you would like because Tytan’s time is short, and I honestly don’t know how much longer he will make it. At that moment, my body froze and I felt my heart shatter into a million little pieces. I couldn’t let go. I couldn’t go on without him. He had become my whole life over the past 6 months
Our family came one by one to kiss our boy and say goodbye. They sobbed and they sobbed. Azleigh, his big sister, rocked her brother over and over again singing “I am a Child of God”. We had the sweetest nurse who organized our room and got a bed, so I could sleep with my little guy for his last nights. We took Tytan and Az on one last wagon ride together around the ICU. They both loved it. It tore me apart knowing these moments on earth wouldn’t be possible for much longer, but I tried not to think of it and tried to enjoy BOTH my babies together. We cherished EVERY moment we had left as a family of four.
Sunday was Tytan’s half birthday, so we decided we would throw him a party because the reality was he wouldn’t be here for his 1st birthday. We had no idea Tytan was going to pass that day, but now looking back there was a spirit in the room that day that wasn’t present any other day. There was always a sweet spirit, but not like this one. Tytan’s little body was so worn out and things were slowly shutting down, but on this day he was so awake. He knew it was his last day on earth, and he was sure he told everyone goodbye. He spent much of his time looking upward, and I now know he was conversing with the angels. We sang happy birthday to our boy, took pictures, had cake, and just visited. Most of our family had left or at least were out in the waiting room. I turned and noticed his heart rate was a little lower than usual. I asked his nurse Brandon if that was normal, and he assured me it wasn’t anything to worry about. Sometimes the pain meds can lower your heart rate. I continued to watch the monitor and within seconds his heart rate started to drop. It went from 120 to 109 to 91 to 89 to 70 to 62 to 48 to 27 to 18 to 11 to 7 to 0. Yes I very vividly remember each one of those numbers. Tytan was asleep until his heart hit 0, and he opened those big bright blue eyes in fear. I could tell he was scared, torn, and not sure what was happening. At that moment, I said the hardest words as a parents. “You can let go now Tytan. You’ve passed your test. Mommy will be okay!” I watched his little chest rise about 3-4 more times after and he was gone.
At 4:00 P.M in room 7 in the Cardiac ICU, the same room he started life in, our sweet little boy was pronounced passed. Tytan declared it was his time and was able to pass quick and peacefully. My heart was broken and I wasn’t sure how I would ever survive, but all I did know is my baby boy was finally free. He never again in his life would have to be poked, shocked, cut open, or hurt in anyway. He was safe in the arms of a loving Heavenly Father.
To those of you reading this, it may just be another sad story to you. You are probably thinking “It’ll never happen to me.” I spoke those same words just two shorts years ago. If you were to ask me what CHD stood for I probably couldn’t have told you. I had no clue just how mean, cruel, and heart wrenching those three little words could be until our Tytan was born. It is a CHD that forever changed my life, my family, and me personally. It is because of a Congential Heart Defect that I will always have a hole in my heart. A CHD can happen to anyone and is more common than you would expect. That is why awareness is so important. If it wasn’t for the little awareness it has now, my little Tytan wouldn’t have lived more than just a couple days. Ten years ago, babies born with certain defects had no hope. They were sent home to pass. We have come a long ways but it still isn’t enough. I often wonder if Tytan was born even a few years later if there was more they could have done for him to keep him here with us longer. We need more awareness, more research, more funding, so that no child has to go through what Tytan went through and no parent has to go through the pain and suffering of losing a child. CHD Awareness is important because it can change lives. It can heal hearts. It can save lives.
– Teisha (Tytan’s mom)
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