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.

Long, Hard Road to Success

I'll admit- I have been struggling. REALLY struggling. After the last outside walk I did, the cold hurt my joints so badly that I have not been back outside, except to run errands. I have exercised indoors a couple of days, but not anything more. I know I am slacking. I know I need to push myself. I just .... I don't know. Life has suddenly felt very overwhelming. I have used the excuse that I hate treadmills and working out indoors, which I do. Yet, if it is my only option, then shouldn't I do it?

A few days ago, my two youngest children and I started a gluten-free lifestyle. This was decided on by me after a lot of monitoring of our bodies, research, and prayer. For now it is right for us. countless hours are spent everyday talking to people, researching recipes, and planning out meals.  In 6 weeks, we shall see if it needs to continue at such a drastic measure. I did not realize how much I love bread products until this change. I am tempted to go full Paleo, but not just yet. All of this has added to my overwhelmed state of mind right now. Gluten-free is a difficult change- especially when you have a picky 6-year-old and an 11-year-old with severe sensory issues and the textures bother him so much. I pray this GF lifestyle will be a quick adjustment, that we can pinpoint the needs of our family quickly, and that I can get back to not being so overwhelmed in my tasks at hand. The biggest task: getting fit in order to fun a marathon.

I told you from Day 1 that there will be total honesty here, right? That is why I am sharing this with you. I am struggling, but I am going to pick up the running shoes again and make this week really count! I know I need to get out there and exercise everyday. I know these kids are depending on me. I know I am going to feel better in the end. Until I get used to a regular routine, though, it is not going to happen. It does my heart, body, and mind good when I work towards greatness. Only I can make it happen. It is going to be a long, hard road to success. I know I can do this... even if it is one step, one day at a time.

My name is Jenny McKinney. I am going to make this week count and.... I am not really in the mood for chocolate.

New Year JOG!!!

HAPPY NEW YEAR!! Isn't it wonderful- to have a whole year to improve before the next one rolls around? Isn't it GREAT to have a whole new year to reach your potential? I LOVE having a new year!

Today, I did something I was not expecting to do just yet. For the first time in four years.... I jogged. I JOGGED!!! I was going up the incline and thought, "Why not? You've gotta try sometime!" So there I went- jogging! I remembered my jogging posture and went about 20 yards before I started walking again. WOW! That felt AMAZING! Because it felt so amazing, I decided to try it again! I walked about 30 yards, then started jogging again! I heard a vehicle approaching, so I looked to make sure I was not too close to its path when I heard, "You can do it! WOOO!!!" It was my HUSBAND! How cute is that?!?! I yelled at him,
     "I'm jogging! I'm jogging! I'm really doing it!" all while passing the mark I had set as my goal. As I jogged and he drove, we chatted.
     "How does it feel?" he asked with a big smile on his face.
     "It feels AMAZING!" I enthusiastically responded. Do you know what? It did feel great! I continued doing the walk/jog/walk/jog rhythm, paying close attention to how my heart area felt. I want to weep as I write this. For this first time in adulthood that I can recall, my heart did not hurt when I jogged! 

I cannot tell you how awe-inspiring it is to think that 6 months ago I was told my heart was failing and I needed a life-saving surgery and today I was jogging without any pain. God is so Good! He lead the medical team to save my life. He performed a miracle in me. How can I not continue on this path that He has placed me on? How can I not think of my little heart friends?

My name is Jenny McKinney. I am officially a jogger (runner?) and I do NOT want any chocolate, because I had too much last night! ;)

HAPPY NEW YEAR!!

    

Ready? Set? RACE!!

It's ON Like Donkey Kong! Haha! I love that phrase from high school! Last night I researched out and decided on the races I will be doing. Yep, races. Plural. Note: I am not racing. I am just referring to them as that. I will share the dates with you in a minute. First, I have to tell you about training today and to say thank you to my hubby who encouraged me with these words: I will support you in whatever way I can. Thanks for that, Babe. I love you!

I love my girl. She is an "almost seven" blue eyed cutie who adores her mama. (I'm so blessed!) This morning, Princess B decided she wants to do the race with me. I explained to her she may go walking with me whenever she wants, however she may not quite be ready for the race.
     "But I LOVE racing, Mom!" she exclaimed as she began jogging up the hill in her orange sweats, purple shoes, and metallic purple jacket.
     "I know you do! The race is just a bit farther than you think it is." We went ahead on our 20 minute walk up the hill, along the icy frontage road and began the descent towards our home when she started asking more questions about the race. She wanted to know how far it was. When I told her it was a LOT farther than the walk we were taking, she again told me, "That's ok. I like to race." A few minutes later, as we were nearing the bottom of the decline, she shared, "My legs are feeling a bit weird." I explained to her that it was probably because we walked farther than she is used to. I told her that she might want to wait until she was older to run in the race. After telling me she wished she was older so she could race with me, she finally admitted, "I don't think I want to run in the race. I'm tired." I then took the next few minutes to make sure she understood why I was running in the race.
     "I am not running to win, B."
     "But, Mom, if you win, you get prizes!"
     "Oh I know, but I do not need a prize. I am doing this to show Heavenly Father how grateful I am that he fixed my heart. I am also doing this because when my heart was sick, I could not have done it. Now that it is better, I can do this race. I am also doing to to show my former teacher honor and respect because she was so kind to me in my life. Mostly, I am doing this for all the Heart Hero friends that cannot run for themselves. These kids have hearts that do not work right and so I am running this race for them, since they cannot do it for themselves. Do you understand?"
     "Yes, but you get prizes if you win, Mom!"
     "Do you know what I want you to do? I want you to be at the finish line when I cross it (she gasps) with our Heart Hero friends (another gasp) and cheering me on yelling You did it, Mom! You did it!" (one more gasp)
     "I will be your we-ward, Mom!"
Sigh. I love being a mom. Yes, Princess B.... you certainly are my reward.

Races I am registering in:
May 3rd- 5K Fiesta in Sandy, UT
July 4th- Riverton Country Mile 10K in Riverton, UT

August 9th- Famous Fruit Way 1/2 Marathon in Ogden, UT
September 27th- Layton Marathon in Layton, UT

Anyone is welcome to join me! Oh and I took my measurements and weighed myself this morning. I even wrote down the info in my handy-dandy notebook. THAT is how serious I am!

My name is Jenny McKinney. I am serious about this and I really want some 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!

Heart Hero Marathon

I have done it. I have gone completely batty..... or at least that was eluded to in a conversation I had today. I have decided to train this upcoming year to... gulp... run... RUN.... (I do not run!).... a marathon!! Unlike so many athletes out there who are in no way crazy, what makes me a little odd is that I do not even run! I love the outdoors and I enjoy taking walks. I even have enjoyed playing sports over the years for fun, but I am in no way an "athlete" and in no way a "runner." So what made me decide to set this hard-to-achieve goal? The Heart Warrior kids, of course!!

A few months back, I joined the IHH group (Intermountain Healing Hearts). They are SO loving and accepting of heart families, even us adults with CHD we did not know about until mid 30's. I fall in love with the heart kiddos everyday as parents ask for prayers, share stories of triumphs and tell about their heart child gaining angels wings. It is a place of healing, of support, of love. Recently, Taylorsville High in Salt Lake City had a fundraiser for IHH. As a thank you to them, IHH put together this video of some of the Heart Hero Warriors in our Heart Family. I fell in love with them even more! I have been praying for guidance as to what I can do to show my love and appreciation to this marvelous group of friends. I have been asking God to guide me to know how I can take my now-healthy heart and use it to bring glory to Him. I know He wants me to teach others about these heart heroes. These thoughts joined other thoughts I have been having.

I want to DO something to celebrate my life! I want to DO something to say, "Hey! God has used His great power to do wonders through me. Pay attention to what He does with you!" I want to DO something so one day someone will say, "Remember that crazy woman who _____? That inspired me. I want to do something as well." Then, a few days ago, I can across some love notes from Cheryl Nelson, my beloved high school English teacher, who passed away in 2000 from lung cancer. She was a marathon runner and breast cancer survivor. She was also like another mother to me. She was one of the most single impacting people in my life. I miss her greatly. She is still inspiring me today.

The past few weeks, I have considered not writing on this blog anymore. After all, I need to simplify things in my life. Then I thought, "What if? What if someone out there, just one person, needs to hear more of my story? Ah, but what story do I have to tell? I have shared my heart story." So, I prayed some more. After watching that video, finding these love notes, reading an article about her passing, and praying again about what I can do to bring light and love to the Heart Warriors, I knew what I had to do. I had to commit to something- BIG- and follow through. I had to tell people- publicly- about it so I can be held accountable. And now, the commitment is made and I am going to do it- I am going to run a marathon!

Please note: I am NOT doing this to bring any form of glory to myself. I am doing this because I want to honor Cheryl Nelson who inspired me to do something great in my life. I am doing this because I want to do what those Heart Warriors- the Jace's, the Baylee's, the Christina's- may never be able to do for themselves. Mostly, I am doing this to do this to bring honor to God. He did heal me, after all. So let's do something to celebrate!

Join with me on my journey as I began getting in shape so I can start training. Today, I took my first 20 minute walk since my heart procedure this summer. That is 20 minutes more than I could walk two months ago! Yes, I know I have a LONG way to go, especially since I am not a runner, but I know with God by my side, and Heart Warriors cheering me on, I will do this!

My name is Jenny McKinney. I might just be crazy because I am going to run a marathon. Oh, and I really, really want some chocolate, but will pass for now. ;)