Kayn’s Journey

August 6th, 2018, the day Alex and I first found out we were going to be parents. We were so excited and couldn’t wait until that twenty-week ultrasound to find out what we would be having. The Morning of November 14th felt like it would never come, but ended up being one of the longest days of our lives. We spent over eight hours at the doctor that day. We found out we would be having a precious little boy, but that little boy would be extra special because he had a congenital heart defect. Our precious, little Kayn’s right side of his heart was enlarged. He had right tricuspid valve regurgitation and right ventricle dysplasia with small pulmonary arteries – a rare congenital heart defect. This meant weekly visits/ultrasounds at our local hospital and monthly visits to Madison to see the pediatric cardiologist.

Each week, Kayn proved his doctors wrong and did not develop severe heart failure. They induced us at 37 weeks gestation. Kayn made his debut on March 13th, 2019, at 1:54 am via urgent C-section due to increased arrhythmias during contractions. After several hours of waiting, Kayn was stable and with the help of the cheetah team was ready to be transferred to AFCH.  He quickly started to have complications and needed to have his heart repaired that day. After approximately eight-plus hours of surgery, they patched his right side and placed a BT shunt. At not even twenty-four hours old, our strong little guy went through more than most adults go through their entire lives; lines, chest tubes, breathing tube, feeding tube, monitors and twenty-four-hour nurse monitoring.

For the next three weeks, all we could do is sit there and watch as our baby boy fought to live and to heal his little body. During week four, he was finally stable enough for us to be able to hold him.  At five weeks old, he was strong enough to get his breathing tube out, but after only four short days,  he had an episode and have to have it put back in. It was heart-wrenching to watch Kayn struggle to breathe as well as fight withdrawals from the necessary pain medication.

About a week and a half later, he got his breathing tube out for good! Each day after, we watched Kayn get stronger. During this time, he was working with physical therapy doing tummy time, stretches, and getting a lot of snuggle time with everyone. He quickly won over everyone who stepped foot into his room. Kayn had such small pulmonary arteries, that anytime he would get upset his stats would drop and he would turn a not so pleasant shade of blue/grey. Unfortunately, we live over two hours away from Madison and due to his small arteries, he had to stay at the children’s hospital so he could be monitored closely and grow.

On June 3rd, Kayn was able to switch over to slow-flow oxygen cannula. Over the next several weeks, Kayn was growing, playing, snuggling, and having lots of monitoring and tests done.

A big struggle for Kayn was eating by mouth. He did all of the right things but, unfortunately, with his swallowing, he was inhaling his food. Kayn was getting close to needing a cardiac catheter to look at his pulmonary artery growth. As a result, we had to discontinue our attempts at bottle feeding so he didn’t get sick.

July 22nd, cardiac cath day, another long day for Kayn. The day included more sedation, more pokes, more testing, and more of sitting there watching our baby struggle. Kayn took three days to recover from his procedure. Kayn reminded us that he was a strong boy and smiled at all of us; no matter what happened to him, he was such a happy baby. All of the nurses would fight over him. They all loved him and cared for him as if he was their own.

On August 2nd, Kayn had his second open-heart surgery. He had quickly outgrown his BT shunt and had to have a central shunt placed. During the surgery, he also had to have his pulmonary arteries opened up.  It was like starting all over, lines, tubes, breathing tubes, and lots of monitors. This lead to more time spent crib side watching, hoping for a quick recovery, and feeling helpless for our little baby boy.

Once again, he fought so hard to live and to heal his little body. Our little guy, once again, proved to everyone how strong he was and after two days was able to get his breathing tube out. That day we were able to hold him again.

During day three of his post-operative healing, that little love bug of ours smiled at us. Kayn was healing so well after his second surgery. He was back to his lovable, playful, happy self.

Then on August 9th, Kayn became quite irritable and unable to settle; which was not like him. After some pushing tests were done, it was found that Kayn had a bowel infection. The infection was caught early and treatment was started right away.

Two days later, the night of August 11th at 11 pm, we got a phone call that no parent ever wants to get. It was the PICU, Kayn was not doing well and we needed to get there right away. That night, Kayn went into an arrhythmic rate and his heart was unable to handle this change and he coded. The staff and nurses did everything they could; they did CPR for over an hour before starting him on ECMO.

Our sweet Kayn suffered extensive brain damage from the lack of blood flow. Kayn passed away the next day in our arms with his loving family surrounding him. There will never be a day I don’t miss my baby boy. I will always remember his smile, his voice, the way he loved to snuggle, the love he had for us, how much he loved his mobiles, watching his lights, playing with his toys, and how much he loved everyone.

We cannot express how thankful we are to the wonderful, caring, and loving staff and doctors at American Family Children’s Hospital for giving the best care and lots of love to Kayn.