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!
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