Baylee... a Heart Hero Warrior

Meet Baylee. 

Baylee Ann Neil was born on 05/06/00. She was a small 4lbs. She was healthy for the most part and we took her home at 5 days old on an apnea monitor. On 06/27/00 the heart rate alarm went off on the apnea monitor. I took her to our local hospital they thought there was a problem with the monitor. They listened to her heart and said she was fine. As we were in the ER waiting to be sent home, a doctor walked by the room we were in. He walked in, not saying a word to us. He just got his stethoscope and started listening to her. The next thing I know her room was full of doctors and nurses, pumping her full of medication and begin cardio converting her. At this point I still knew nothing except my 4lb baby girl was lifeless and there was nothing I could do. She was stabilized and airlifted to Primary Children's Hospital. Later that day we were told she was diagnosed with Wolff-Parkinson-White Syndrome. She was started on meds to help keep her heart rate stable. We spent many weeks in the hospital at this time. We finally found a combination of medication and she was stable, so I took her home and tried to find a new normal in our life, making sure she had her meds at the right time.

This was a very hard time for me for I had a lot of unanswered questions. She had several events of SVT that she needed intervention to bring her out of it. Sometimes it was medication and sometimes cardio conversion. We were in and out of the hospital for 4 years trying to find something that would work for her. Nothing was doing what we needed. She had coded 3 times! So when Baylee was four years old, the decision was made to go ahead and do the ablation. They wanted to wait until she was much older but because nothing was working, it was time. 

The day came and she went into surgery. The surgery was long. The first several hours are just mapping the heart out. We were updated every hour or so and things were going well. At about six hours into surgery, we got the news that when they put her in SVT (Superventricular tachycardia) her heart rate went much higher then they expected! This changed her diagnosis too dangerous Wolff-Parkinson-White syndrome. They were able to ablate one extra pathway but found several more. They were unable to do anything more at this time because they could not bring her out of SVT and she was going to lose her life if they could not stabilize her ASAP. After several hours she was stable and we could see her. (That was one of the scariest things in my life!) A few days later she started experiencing seizure activity and was diagnosed with epilepsy. 


She is now 13 and has had many ups and downs along the way. At this point she is doing well. She is in 7th grade and loves softball, drawing, singing, and she is passionate about making people aware of CHD. She live a fairly normal life and I am so blessed to have her in my life. I would not wish CHD on anyone but I would not change who it has made us become. We are better people for this journey we live every day.

Baylee is the oldest of 3 she has a younger sister 
that is 12 and. Brother 10. This has been a life changing experience for all of us. We can't change what God has dealt us so we choose to embrace it. I have seen things no mother should ever see, but it makes me a better person. I have raised Baylee to not be the heart kids at school just because she has a problem it does not define her. She is the most caring, loving daughter I could ever ask for she has a smile that lights up a room when she walks in. Baylee loves to hear other stories and become heart sister with them or brothers. There are several heart kids that Baylee sends cards letters pictures to all the time. I am so glad she has turned this life into something amazing she does not let anything hold her back.
(This story was written by Kelly Kinross, the Heart Hero mother of Baylee.)

My name is Jenny McKinney. I am grateful for Heart Warriors like Baylee. Let's all go have some chocolate! 

Sherri... my Heart Hero Sister

Who do you know with a CHD (Congenital Heart Defect)? As I have been getting to know families in the heart community, it amazes me how these children are able to keep going with the surgeries, pain, and procedures day after day, year after year. Just as much, the CHD parents awe me with their never-ending fight to do everything in their power to make these children well, to give them the best life they possibly can for as long as they have them. 1 in 100 children will be born with a heart defect. Most of them will go on to having at least one surgery in their lifetime.

Meet my sister, Sherri. My sister is a CHD survivor. Sometimes we hear the word "miracle" and shrug it off. Well, my sister is a miracle. In 1974, Sherri was born with a heart murmur and a hole in her heart (VSD). Medical technology was not as advanced as it is now, so the depths of severity was not known. What the doctors in Kansas City, Missouri did know was that she needed surgery to save her life. Because of the circumstances surrounding our mother's marriage, our mom had to take her two children (ages 2 1/2 and newborn) and flee, so surgery was not an option right then. They trio boarded a plane with our aunt (Mom's sister) and went home to Mom's parents in Arizona. There, the follow up would take place.

The miracle came when our beloved Grandpa Berry laid his worthy hands upon her head. He administered a Priesthood Blessing- the same kind of healing blessing Christ gave when He was on the earth. It was through this blessing that her heart was healed. Our Grandma Berry used to say Sherri's heart sounded like a washing machine but that would not last forever. Sherri was taken to Phoenix Children's Hospital where she spent the next few years undergoing tests and follow-up care. Even this morning as we talked on the phone, she recalls sitting in the hospital room, being hooked up to wires. She remembers the blinds being in an open position so she could see outside of the hospital. She was worried someone would walk by and see her that way, and it made her a bit nervous that she was not covered up.

Sherri never did have to have heart surgery. After the blessing the hole closed and as far as she knows, the murmur went away. Although she has faced other health challenges in her life, her heart is whole again. She is a walking miracle, granted by God.

I am grateful my sister is here. I am so grateful that we both had our miracles and both of our hearts work well now. I am in awe of the miracles of God that have been granted to our family. CHD is real. Please take time and make yourself aware.

My name is Jenny McKinney. I am the sister of a Heart Warrior. This morning I really do not care for chocolate.

WHAT am I DOING?!?!

This evening, as I was preparing a high protein snack to eat before my 2nd walk of the day (In fact, my 2nd walk in this journey) I thought to myself, "WHAT am I DOING?!?! I can't run a marathon! I am only prepping for my second WALK, not RUN and I am feeling tired already. TWENTY-SIX point TWO MILES?!?! Am I KIDDING myself?!?!" Then, I felt the tears forming, took a deep breath, and recalled the words a heart mama friend told me today. "I will be standing proud [at the finish line] with many happy kids as they see that a true heart warrior can do anything. I am so excited and hope with all our help we can make it a larger then life event. Because that's how big your heart and determination is larger-than-life." After that recollection, God whispered to my soul,   
"Because this is what you need to be doing. You are doing it for these children, my children."
"But Father," I replied, "I am not a runner. My heart is barely better. How can I do all those miles?"
"You can do it, because I am going to help you," He gently responded. "Those kids need you to do this for them."

After my conversation with my Creator, I had my snack, put on my warm gear (27 degrees that felt like 18 when I went walking this evening), got the dog on her leash and hit the dark and icy-in-many-places road to do my evening walk. The good news is that I did it. The better news is that I could have gone longer had my dog not been dragging me unsafely on the ice. Yikes! The best news is, I know God is by my side every step of the way in this journey. There are friends and family cheering me on and helping me prepare with planning eating and exercise habits. There are Heart Warrior Mamas that have offered to run with me. There are Heart Hero Warriors to keep in mind and from them I am already feeling the love. Best of all, there is my loving Creator who will be there at the finish line with those young Heart Heroes, knowing that by proxy of my legs and healthy heart, they ran this marathon too.

My name is Jenny McKinney. I am happy to be a Heart Warrior and I... really want some chocolate! Oh! Hubby just brought me some!! YAY!