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40th Annual American Heart Association Beach Ride

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Team Hazelyn Strong

Hello everyone, .
My name is Kenzie and I am honored to tell a story to y’all about my very own hero, a heart warrior, my daughter Hazelyn Lee Frye.

(I’ll try to make it as short as possible!)

Some may know but most probably not.

But let me just say thank you first off for this amazing opportunity to share our story with y’all and we are honored to be a part of an amazing cause and group...

It all started at roughly 20 weeks pregnant we found out about our babies heart condition. It is a very rare heart condition called Ebsteins Anomaly. Which is where you don’t get proper blood flow and oxygen from the left side of your heart to and from the lungs.. there are many stages of this condition and you don’t really know until birth because a fetus doesn’t use its lungs inside the womb. They thought it was going to be a mild case where it would end up correcting itself at birth or shortly after.

We were due May 12, 2020. But due to major pregnancy complications we were rushed from Mission Hospital in Asheville NC to Levines Children’s Hospital in Charlotte NC on April 2, 2020. On April 3, 2020 we were having an emergency C-section.

On April 3, we welcomed baby Hazelyn (Hazie) into the world. From there the troubles started. She was 5 pounds 13 ounces and 6 weeks early. Due to her being a premie they had tonhold off on any surgeries cause they didn’t want to chance anything. Finally on May 12, 2020 our baby had her first heart cath done. At only 6 weeks old. They thought this would do the trick for a while. She progressed a little and we hoped to go home then on May 26, 2020 they decided to go another heart cath. She slowly started to do worse and it started getting worse faster and faster. So on June 5, 2020 we had our 3rd heart cath. She progressed great and on June 10, 2020 we finally 69 days after birth got to bring our baby home.

She didn’t ever take to a bottle and aspirated every time she ate. She got a feeding tube placed in her stomach on June 8, 2020. After training and everything we got to come home o n a feeding tube where she eats 24 hours a day using a pump, and lots of medication.

She done so good while at home so we got to where she was off of her feeds for 8 hours a day and came off of her meds.

On September 4, 2020 we went for our bi-weekly cardiologist checkup. He decided to contact our team from Levines to schedule another heart cath. They . talked and got us on the schedule for the following Thursday. So on September 9,2020 we went back to Charlotte for what was supposed to be about a 3-4 day hospital stay.

On September 20,2020 we sent our baby back for her 4th heart cath. During the heart cath they found several things wrong with her previous stints placed in her heart and a very rare strand of strep infection in her heart which had cause an aneurysm to form on her left side of her heart which is her bad side. The type of infection the team had never even treated before and after two days of research on it they found a baby who had the same heart condition as Hazie in China that had the same thing. They started her on one antibiotic that was a 2 week course and another antibiotic that was a 6 week course of treatment.

Due to they many complications found they decided to do Hazies open heart Glenn surgery which we were planning on around the end of 2020 or beginning of 2021. This surgery they said typically kept a patient in the hospital about 14 days afterwards. So on September 16, 2020 we sent our baby back at 6 am to have her Glenn surgery at around 1 pm we got a message that said the team ended the conversation with us for surgical updates but nothing else. We didn’t hear anything until around 3:30 because nobody knew anything. At about 4 we finally got to see our baby.

It was scary and hard. COVID-19 made everything about this whole process harder. No family could come in nothing. Just new parents and a very sick baby.

Normally they said within 2 days the ventilator comes out but normally within the first 24 hours.

They left her chest open and kept it open for 2 days after surgery. So naturally she stayed on the ventilator for those days. On September 20, 2020 at around 12:30 in the morning our baby started fastly dropping her stats and ended up almost coding. At one point I counted 17 nurses doctors and caregivers frantically working and bagging her for at this point I just knew we had lost her. About 30 minutes later she was stable again.

On September 23, 2020 she had another heart cath because she was not progressing at all.

Finally 15 days later on September 30, 2020 she comes off the ventilator. That means we finally get to hold our baby, hear her voice, see her eyes for the first time in 15 days. We should have already been home by now. But we were just coming off the ventilator.

Once she came off the ventilator she had no voice really and it took her about a month or longer to get it back. No cries or anything.

Finally on October 12, 2020. 27 days later we GOT TO COME HOME.

We came home on .75 liters of oxygen, her feeding tube and lots of meds but we came home.

We are currently 66 days after open heart surgery and almost 8 months old. We are still on .75 liters of oxygen, lots of medicine and her 20 hour continuous feeds. We are doing well but have a lifetime of surgeries ahead and a transplant in her teen years more than likely. So while we are at the complete opposite end of the scale they said we would be on, the worse end, we are here with our baby and she is alive.

We have lung disease as well as heart disease and several other health problems but we have a TRUE HERO AND HEART WARRIOR RIGHT HERE. 

We have seen so much love, support and PRAYERS from across the USA and hope Hazies story can help someone else and this amazing organization raise money for those who are heart warriors just like our baby Hazie. 

We are #HazelynStrong

-sincerely, Kenzie, Bradley and Hazelyn Frye.

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