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! 

It Takes Time

"It takes time to recuperate."  This is a phrase I have been reminded of daily for the past week.  Today marks the one week anniversary of my procedure.  I truly thought I would be more recovered by now.  Yesterday, I made dinner for my family.  Today, I went shopping for about three hours and.... it just about did me in.  My heart has been racing and just an hour ago it was racing so badly I would have been dead, had I not gotten the procedure done.  A little concerned, I began doing research on post-ablation symptoms.  Once again, I have learned something new.

First, I read the list of risks in getting the procedure done.  Of course, the risk was much greater had I not (as in cardiac arrest) but let's say I am grateful that I did not read the list prior to going in.  Here is what I read:

Catheter ablation is considered safe.

It has some serious risks, but they are rare. They include:

• Stroke.
• Heart attack.
• Puncture of the heart.
• Need for emergency heart surgery.
• Problems with the pulmonary vein.
• A leaking blood vessel.
• Nerve damage that causes paralysis of the diaphragm.
• Pericarditis.
• Cardiac tamponade.
• Atrio-esophageal fistula. In this life-threatening condition, a hole forms between the heart's upper chamber and the esophagus.
• Bleeding.
• New heart rhythm problems.
• Death (very rare). 

WOWZAH!!  See why I am grateful I did not read it first?  Oy!!  Talk about scary.  I always laugh when they say "death" then add that is is very rare.  Hehe.  Well, good to know I only might die!! 

(It kind of reminds me when I have volunteered at the prisons in Boise, ID the past three years with my women's choir.  With the paperwork we sign, it has a list of guidelines.  The first is something along the lines of: I understand that by going into the prison, I am putting myself at risk for injury or being held hostage.  Haha!  No worries there!)

Back to what I have learned.  It is very normal, actually, to still feel like you are going into tachycardia, then it mellows off after a few minutes.  This is as a result of the adrenaline that was pumped into my body while I was under anesthesia.  My body is just trying to work it out of my system.  Weakness and pain around the heart is normal as well.  "Jenny!  They were inside your heart, burning it!  Of course it is going to hurt!"  This is what I have to keep reminding myself.... or my mother and hubby will.  Haha!  I just want to be 100% again.  I want it to be two months from now where my heart is back to  finally working how it should.  Patience.  I just need patience.  Haha!!  It takes time and I have time, so I will take it. 

The best advice I read from one person who has been through this is, "completely normal - your heart's been through trauma and it may take some time to heal - some of us depending on what was done; can take up to 6 months for it to completely heal and the full effects of an ablation to work
take it easy and let yourself heal and try not to be too anxious"

Oh.... take it easy??  Let myself heal?  Sigh.  All right.  I guess I will. 

My name is Jenny and I will heal.  I really do not want any chocolate..... because I just had some. 

This was taken the week of my diagnosis in June.  I had to wear a lot of makeup to even feel confident because I was so ill.  Notice the sallow look to my skin.

This was taken today. I have a new hair style, I feel confident wearing a lot less makeup and I am able to even keep my eyes open in the sun because I am feeling so much better!  Good health, here I come!  (By the way, that is my cute boy- age 14- in the background.)

A Bruised, Nervous and Wondrous Heart

Truth # 1: From Day One, I said I would be honest about this road.  Here is the truth: I am still nervous.  I wake up every morning and check my heart rate.  It is a steady beep... beep... beep.... unlike before where it was skipping beats, or there were too many at once, or, or, or.  However, after living with this for half of my life, if not longer, it is hard to just let go and not be a little concerned.  The "what if's" still run through my mind.  As much as I trust in my God and in the amazing doctors I have, I am still human.  In November, I knew I was going to die within a couple of years.  Even if I had gotten the implant, there was still a chance my heart would give out.  Now it is fixed?  Just like that?  It just all feels so.... surreal.

Truth #2: My heart hurts.  Now, I realize that just three days ago, the doctors were actually inside my heart, so of course it is going to feel bruised.  Like I said before, though, I am not a very patient person.  I am a "get up and go" kind of person, so being down for a third day in a row, when my heart has been fixed and I know soon I will have energy again, is a bit of a challenge for me.  I can feel the arteries they went through.  My neck is sore and I can feel the route that the docs took to get to my heart.  I can feel the route part way up my abdomen where they went through my groin.  There is nothing to worry about, but I am a big wimp and I hate being bruised- especially inside.  It is a weird feeling and when I feel the bruising, I feel a bit nervous.  That is when the what if's start again.  Then I have to stop and remember that I had a miracle.  My heart truly is fixed.  I really am ok. 

Truth #3:  I am in awe.  I have been researching what a heart cath looks like and what the ablation looks like and I am in awe.  It is astounding to me that without any incision, with two entry points not much bigger than an IV, the team of amazing medical professionals were able to send a camera (cath) to my heart to look inside of it, then send another device to fix it! 


Although I have always been a fan of treating ourselves naturally- and I still am- I do believe there is a time and place for modern medicine.  I am grateful that at this time and place in my life, modern medicine saved me.  I will let my nervousness go because my heart is whole again.  Now I can hold hands with my sweetheart for many more years to come.  Now I can see my children raised. Now I can write more music and share the music I already have been blessed with.  Now I can make the world a better place for a longer period of time by sharing my light.

Oh heart, my heart, how I love to feel you beat.
My name is Jenny McKinney.  I am in awe of our miraculous ability of our bodies to heal and I really want some chocolate.