The Truth Shall Set You Free

It has been a quiet time for me on the computer these past few months as my laptop crashed and I do not get on the family computer for extended periods of time. It is so different from my own computer that I find myself not being as appreciative that we even have a nice computer. That gets my wheels turning, though. How often do we have something decent, lovely, useful, etc. and we do not appreciate it, because it is not what we wanted, nor what we planned on having? How often do we begrudge our life's journey because it is not the direction we planned on taking? How often do we allow ourselves to become bitter towards another, even God, because life has not worked out to our specifications? No more for me! It is the end of a year of Conquering Mountains and now onto a year of Renewed Hope.

Each year, I choose a phrase or word, instead of setting a bunch of New Years Resolutions I will never complete. As 2014 is winding down, and I look back, I see that I truly did Conquer Mountains. I look forward to 2015 with Renewed Hope- hope in my body getting stronger, hope in strengthening friendships and mending relationships, hope in being more proactive in my music, hope in other human beings also trying to do good in this world. The goals I set will be throughout the year with the theme "Renewed Hope" and that theme will be my motivation for becoming better.

Ready to run.... or walk

Back in September, I ran a 5K. I know... I did not write about it here, but lucky you, I will include pictures today. Last night, I had a long, continuous dream about my family spending time with my heart surgeon's family. In this dream, Jared (the first name of my doc) and I had a lengthy conversation about how my progress has been, and how difficult it has been on my emotions that family members do not believe in all I went through. He shared with me some insight that helped me feel peace this morning. He told me that I know what I went through, my husband and children know what I went through, he- my heart surgeon- knows what I went through, but most important, God knows what I went through. The rest does not matter, he shared. They choose to believe what they choose to believe. He said to me, "Jenny, I was inside your heart. I literally know what is in there! Your heart was damaged but God granted you a miracle and He healed it! That is what you need to share!" So, share I will!

I share this to all who care to read. I share this for those that might need a reminder that God loves you and that He is real. My heart was broken, and now it is healed. God did this for me!

When I was 20 years old and experiencing difficulties with my first pregnancy, I was diagnosed with arrhythmia. For the next 14 years, I was in and out of hospitals and doctors offices trying to find out why it was so bad I would pass out without notice, why it was so bad that I would go into A-Fib and V-Tac. What was causing this?! For two years, I was tired so I stopped going in for tests. All I was ever told was that something was wrong and they (the doctors) could not figure out what it was. Finally, with some gentle pushing, my loved ones convinced me to go in one more time to see a new doctor. My darling nurse friend went with me, explaining from a medical point of view how she had seen me pass out time and time again with no warning. She shared insight I was not even aware my body was doing! That was in early 2013.

Just finished!

In May 2013, I went through my last set of heart tests. I was lead to a heart specialist that told me she would keep digging until she found answers. (Side note: That first time I met her my heart rate was at 53 bpm and my blood pressure was about 84/42. She said I should not have been so conscious and talking. I told her it was the norm for me. Again- God did that! He kept me alive!) In June, our family moved to Utah from Idaho while I was still wearing my 30-day halter monitor. We moved because my husband and I had it confirmed to us through the Holy Ghost that I was going to die and we needed to be near family to help with the kids once I was gone.

Dr. L called me the following week with results. She had sought out a second opinion before she called me. It was... really bad and I needed heart surgery to save my life. I was diagnosed with a CHD- which means I was born with this condition. Wow! I was sent in to another specialist in Salt Lake for a third opinion, in which he agreed. "You should not even be alive," Dr. B told me. "You are at high risk for Sudden Cardiac Death. I cannot believe you have not had a massive heart attack or have dropped dead yet. You need surgery asap." Without it, I would die.

I was put on strict bed rest for the next five weeks. If my heart rate got up to 120, it would kill me. The day before my surgery was scheduled, I woke up to it racing at 110 bpm. For me, that was life-threatening. It would not have taken much more to send me into cardiac arrest.

Several days prior to surgery I started taking a micro-nutrient that actually changes DNA. I had amazing results.

On August 12, 2013 I went in for major heart surgery. That day, friends from all over the world were

My heart family

fasting for me and my doctors, many souls were praying as well. I had been given a priesthood blessing just before I went to the hospital. Hours later, when I finally went under the knife, a miracle had taken place. All of the problems that had been showing up on the tests were almost non-existent. My heart had almost completely been healed. The medical team mapped out my entire heart and was puzzled because it simply... was not there. All of the detailed, life-threatening issues were mostly... gone. I came out of surgery with a minor procedure instead of a major surgery. I was told I am going to be just fine.

Behind closed doors, my doctor and I say "miracle" but on paper, my diagnosis was actually changed. It truly is a miracle!!

I am healthy. I am starting to get my energy back, and I look forward to living out a long, full life. God did this. He granted my family a miracle. There is no other way to explain it. He worked through fasting, prayer, blessings, and proper nutrition to heal my body. This, I can never deny, for if I do, I would be denying the truth of my God. That, I can never do.

With this post comes the end of this blog. My life's journey has just begun and my heart is healthy and happy. I will spend the new year focusing on sharing my story (in depth) along with my music and doing motivational speaking. Thank you for sharing in this journey with me. It has been a thrill. You are lovely and good and oh, so LOVED by God!! May He always keep you in His ever-lasting care.

My name is Jenny McKinney. I am a walking miracle. I am a survivor. Like always.... I really want some chocolate.

Heaven's New Angels

Lindsay

I cannot write much today. My heart is deeply grieving and I really do not have any words.

Ryder

It is a sacred place- to be in the heart community. There we fight together, laugh together, grieve together. Today, we are grieving that two more Heart Warriors have been called Home. 

A few days ago, Lindsay joined the angels. Last night, Ryder joined his friend. These previous fighters were just babies, yet they changed countless lives. May God bring comfort to the families of these warrior souls. Lindsay and Ryder, you will forever be loved and always be missed.

 

My name is Jenny McKinney. I am honored to be among the Heart Warriors. There is no need for chocolate this day.

Still Learning

As I think about growing up in Mesa, Arizona, I recall how I spent my summer days outside. 122 degrees or not, you could find me in the neighborhood swimming pool, climbing trees, or running barefoot through the field, even racing barefoot down the blacktop. Our family struggled financially, but we had a home to live in. We had our set of struggles for sure, but in looking back, I can remember many carefree days. We had no idea my heart would eventually be a ticking time bomb from a CHD that would lie dormant until I was an adult. I sometimes have wondered how much the strep infections I had lead the the weakening of my heart. Curiously, my heart now beats strong, with numerous days ahead- too many to count.

There are days when it is hard for me to believe that I am approaching the one year anniversary of my successful heart surgery. Where has the time gone? I am finally coming out of the struggle I've had of of not knowing which direction to take my life. Although it has taken a long time, I finally understand why God chose to spare me. I have a mission I have not yet completed. I have lives to touch, lessons to learn, others to assist. I cannot yet be as the angels when God still needs me here. The storms still rage around me, but there is peace in knowing where I am going. As long as I put my trust in God, He will guide me with His loving hand. Also, I am getting a bit excited, because I am going to be celebrating my one year heartiversary in a big way! I look forward to the new memories with a happy, healthy heart.

My own experiences are bringing me to people that have changed me life for good, people I would have not met otherwise. I have made some new friends who live just down the sidewalk from me. They have a brand new baby, just a month old. When he went in for his one week check-up, they learned he has a condition called Total Anomalous Pulmonary Venous Return (TAPVR).  He was life-flighted from the doctors office to the Primary Children's Hospital (PCH) where they have one of the best cardiac heart teams in the country, if not the world. There, he had to have emergency open heart surgery (OHS) in order to live. Last night, they had to take their baby back to the hospital last night to admit him for an infection. During that time, I had the blessing of watching their eldest, barely two years old. I was in awe of the faith the parents of these baby boys carry. They have full trust in the doctors and in God that whatever is to come is supposed to be. Some may say they are naive. I say their faith is refreshing!

Late last night, after the parents came to pick up their eldest son, I sat down to research TAPVR. I found this website which is great at helping one learn about the various defects. During my research, I learned that there are 49 Congenital Heart Defects (CHD). FORTY-NINE!!! Do you know that 1 in 100 children are born with a CHD? My defect, ARVD, is classified under Electrophysiology Defects. Although I am no longer struggling with mine, I still read up on it, so I understand it better. This information may be critical in months and years to come.

It is not until now I have publicly shared some information. Until now, I was hoping there is nothing to tell. Yet, I feel compelled to share it, for there may be another mother who is enduring the same emotional turmoil that this mother's heart is feeling. There is a 50/50 chance my children will have my genetic condition. So far, my two eldest have not shown any signs. My third, however, is showing nearly every one. Curiosity strikes my spirit strongly as my husband and I prepare for our youngest son to see the cardiologist. On August 6th, we will take him to see a leading cardiologist at PCH. From there, it will be determined what tests are necessary, if any, to learn of the functions of his heart. As a mother and a CHD survivor, I know, I know there is something not quite right. I see it when he wakes up from a deep sleep and his heart is racing at more than 130 BPM. I see it when he walks down the hall, suddenly becoming super fatigued. I see it when we are out hiking together and I check his heart rate, where it has drastically dropped to the low 60's. Something is not quite right. I was hoping it was years before we would have to face this again, if ever. The time has come much sooner than I anticipated, especially only learning a year ago that one or more of my children may dace the same future as I. I just pray for strength on his behalf that whatever we are facing, he will survive.... that we will survive.

I know it is God's will in whatever is to come. He created B-Man's heart and mind. God knew what He was doing when He wired B-Man's brain in such a way that modern doctors would tell us he has autism. This same Creator also knew what He was doing when He put this exact heart in B-Man's body. It is a perfect heart- perfect for whatever lessons B needs to learn in this life and what God needs us to learn as well. God is perfect in His knowledge, even if we are not. Peace does not evade me, but instead permeates my soul. God is with us, walking this road- no matter where it leads.

My name is Jenny McKinney. I am a heart warrior, and possibly a heart mom. Instead of chocolate, I think I shall return to bed.

Living for the Future

Note: The following is a sacred experience that is precious to me, but I feel prompted to share this day. Please do not comment anything negative or mocking to my personal beliefs.

It has been quite a journey- finding my place after my heart was mended. More than I ever imagined, I have struggled in ways I was not prepared for. Yesterday brought a sweet experience to this hurting soul. In my religion, we believe in the laying on of hands, as Christ did in the Bible. It was a few months ago that my bishop (the minister of our local congregation) used this ordinance to relay a beautiful message and blessing from my Heavenly Father. I felt so much peace and knew that my life had been spared for a purpose. Yet, I still struggled. My faith was not great enough to fully accept those promises in that moment. I still battled this unseen force that seem to want me to be lost in a world of darkness. Yesterday, that changed.

I attended an ordinance session at our area temple seeking peace as my beloved aunt was preparing to pass away to the heavens, and searching for that strength that I knew I had somewhere inside. After having a beautiful experience involving my aunt's passing, I was then given a breath of renewed hope and strength for my own mortal journey. I did not realize how much the darkness had been plaguing me until I stepped into that sacred House of God and left the cares of the world behind. It was there that this message of love was shared- and finally accepted. In one moment, I felt the Spirit whisper to me, "Your life has been spared for a reason. Stop being afraid to live!"

So long had I been planning to leave this life that for all these months post-op I have been afraid to live again. No more! From this moment on, the darkness will no longer take hold of me! I will embrace life! I will seize the day! I will look for opportunities to teach others about CHD's, to share my gifts of music and service and most of all, to love my family and make memories with them as often as I can! THIS is the life I have been given to live! THIS is the time I have been given to live it!  THIS is the day the Lord has made and I will rejoice in this day and be glad of it! (See Psalm 118:24)

My name is Jenny McKinney. I am grateful my life that I shall live and... I really do not want any
chocolate this morning. (I had some last night, though!) :)

Happy Val...uh..... Heart Hero Week!!

For many in this country, Valentine's Day is overrated. I am not saying that because I was jilted by a lover (I watched "Wives and Daughters" this week. The word "jilted" is fresh on my mind). Nor do I say that because I am struggling with being alone. In fact, I am very blessed to have an eternal companion of 17+ years. As some struggle with not getting chocolate's or flowers (because that is the only true gifts this day, right? >eye roll<) I like to look at this holiday a bit differently. Today, as we say at our house, is "Love Day"- a day to show love- in all forms... to all people. This day is especially meaningful to those in the heart community, because this is the day we really celebrate our Heart Warriors.

I realize I have not posted everyday this CHD Week like I planned. Sometimes, life gets the best of me and I get a little pouty while I struggle. It is the stories of the Heart Heroes that has pulled me through it, though. Today, I am going to share the stories of a few Heart Warriors that I know will touch your... well, heart!

Meet Emily. She was born with Hypoplastic Left Heart Syndrome. This means, Emily has half a heart. How do parents of such a Heart Warrior cope with this life-changing news? Please read Emily's Story and come to understand true courage. Emily is my heart hero.

Meet Capri. She was born with Ebstein's Anomaly. I do not even know what to say about this Heart Warrior except, please have a box of tissue ready as you read her story. Start at the very beginning so you may walk in her mother's shoes, if only for a moment. She is my Heart Hero. Capri's Story

Meet Jaxton. Born with Hypoplastic Right Heart Syndrome, Double Inlet Left Ventricle, and Pulmonary Atresia. Like all Heart Warrior stories, I cannot read them without a tissue in hand. This one is no exception. I love Jaxton's smile. He is my Heart Hero.

In reading these stories, perhaps you may realize that although today was founded upon a man who was executed, then turned commercial (like every other holiday), it can be something special and dare I say.... sacred... as we celebrate loving our Heart Hero Warriors.

My name is Jenny McKinney. I love my Heart Heroes. Now, where's my box of chocolates?

The remainder of my heart scar on my neck and
me with my new hair cut.

Oh and Happy Heart Day to me... 6 months and two days since my heart miracle.

In Memory of Elaine Andrew

When we were six months pregnant we had a routine ultrasound at our doctor’s office. They technician wasn’t able to get a good look at the baby’s heart, but could see that it had four chambers. During the ultrasound the technician thought that there may be a problem with the baby’s bowel because it looked like it was denser than it was supposed to be. The doctor wasn’t too concerned, but sent us to see a perinatologist (specialist) at the hospital just to be on the safe side. They were supposed to check out the baby’s intestines and also try and get a closer look at the heart since the baby hadn’t been cooperating that day. Needless to say there was absolutely nothing wrong with her bowel. It ended up being a faulty monitor that caused the discoloration, but the specialist did get a closer look at the baby’s heart. We were moved into another room with better equipment so they could get a better look at was going on. The doctor told us he was afraid that our baby had something wrong with her heart. The right ventricle was less than half the size that it needed to be, and there wasn’t any sign of a pulmonary valve.

When we heard this, our stomachs fell through the floor. It is such a shock when you first hear that your baby has a severe heart defect. We immediately had an appointment made for the next evening to be seen by a pediatric cardiologist at Primary Children’s Medical Center in Salt Lake City. We were still in shock when we went to see Dr. Luciana Young. After a fairly long and stressful ultrasound, Dr. Young came and talked to us about what they thought was going on with this baby’s heart. It was confusing, and very frightening. We told our families, and they were very supportive.

All of the doctors and nurses that we saw were helpful and informative. Our questions were answered as we tried to research about HRHS, PA and the different surgeries that she would have to endure throughout her life time. We also talked a lot to the baby’s maternal grandmother, who was also born with a CHD. She helped us understand what to expect and helped us to be more at peace with the situation. We were shooting for a natural birth and had checkups regularly with the specialist. At a checkup at 38 weeks, the ultrasound indicated that the baby had stopped growing and was only about 4 lbs. An amniocentesis was preformed to check the status of the baby's lungs to see if it was possible for the baby to be born early. We waited at home for the results and got a phone call to pack up and be in Salt Lake as soon as possible, because the baby’s lungs were developed enough to be born and since she wasn’t thriving in the womb, she needed to be delivered cesarean.

It was a long wait once we got to the hospital, but on April 20th 2001, after a long, stressful day, our daughter Elaine Ruth was born at 10:39 pm at the University of Utah Hospital. She was 6 lbs. 1 oz. and 18 inches long. She was immediately whisked away to PCMC, but not before the Life Flight crew stopped in briefly at mom’s recovery room so she could hold her precious baby. It was an emotional moment. The doctors had been accurate in their assessment of her problems. On top of what they had seen, her coronary artery was about twice as large as it was supposed to be because her body had grown a massive amount of collateral veins from her right ventricle into her coronaries. The blood needed a place to go and the extra blood flow caused this abnormality. This added some danger in keeping the pressures in her heart where they were supposed to be.

Elaine spent 5 days in the NICU. These were probably the hardest days. Everything was new and intimidating. The meds that she was on to keep her PDA open caused her breathing too slow. She would often stop breathing. This was very frightening, to watch as the nurses would help her begin breathing again, and again. Eventually she was placed on a ventilator. She then had a central B-T shunt placed in her. The surgery had to be preformed twice because the first shunt clotted off. She was reopened and a new shunt put in. This was done by Dr. Gregory DiRusso. She then remained in the PICU for about 2 weeks. She did well. When Elaine went home at 3 weeks old she was on oxygen, Coumadin, Captopril and a variety of other meds. Mom had to learn to insert an ng tube for feeding, but never had to use her skills, thank goodness.

Elaine was small, but did very well recovering from her ordeal. She was off oxygen at 2½ months. She then had her Glenn done by Dr. John Hawkins, in October of 2001 at 5½ months old. She was in the hospital only 5 days! She was such a cute girl and learned everything so fast. She took a little longer than usual to roll over, crawl and walk, but that it to be expected. She had a large lump on her chest that we were told was her xiphoid process (a triangular bone), which stuck out instead of laying flat like it is supposed to. When this happy, loving girl had her Fontan three days after her 2nd birthday, we found out that it was actually one of the wires holding her sternum that had come loose and was poking her. Since it was so painful, her body had grown a cyst around it to protect itself. It was removed during the Fontan.

Elaine’s Fontan came earlier in her life than had been anticipated. Her heart function began to slow and SAT’s were dropping. Her Fontan went ok. She ended up staying in the hospital much longer than expected because she contracted RSV while at the hospital. This made recovery very difficult. She had a difficult time getting her pressures up in her heart, it take a while for the body to adjust. She had a real hard time keeping meds and food down. She had a lot of drainage from her right chest tube. Her baby sister Violet was only 2 months old during this stay at the hospital, so the room was very crowded.

After her Fonatan she had a leaky mitral valve which we thought may require repair, but not likely in the near future. After that we played the waiting game. until the left side of her heart would wear out and she required a transplant. Doctors guessed that this wouldn’t be necessary until she was an adult. During the next year we were able to do a lot of fun things with Elaine. She loved Buzz Lightyear from Toy Story and the Wiggles. She would dance and sing. She really liked Snow White and playing dress up’s. We were able to have a video camera to record a lot of her. She was so happy and compassionate.

Even after all that Elaine had been through she was a joy to be around. She still had memories of her last surgery, but they didn’t frighten her. She loved her doctors! We know that she was looked after by people who love her, and we are so thankful to have had her in our lives. She loved to color, sing, play outside and climb on everything. Besides the fact that she was small for her age (baby sister shared the same size diapers), no one could tell she had such a problem. She had a lot of fun with her baby sister Violet (who has nothing wrong with her heart) and eating pudding!

In February of 2004 Elaine began to show signs of heart failure. She was taken to the Pediatrician and told it was a cold and prescribed cough medicine. When things got worse the E. R. said she may be coming down with an ear infection. In reality she was in extreme heart failure. She was admitted to Primary Children's Hospital on the 15th of March. She was soon placed on the transplant list for a heart. She remained in the ICU for the last 5 weeks of her life. As she began growing worse she refused to eat and different organs began shutting down. It is the hardest thing to see your child suffering beyond all comprehension, and know that there is nothing you can do to ease that pain. Elaine tried to remain happy and would still smile for us, even at the end. Eventually she got an infection in her blood stream. Most likely a result of all the PICC lines, IV’s and tubes she had running through her body. The infection ruled out the option of ECMO. They could treat her infection, but knew she wouldn’t live through it without a new heart. The infection also made her not eligible for a transplant and was taken of the list. One of the hardest things was that Elaine was on so many meds and liquid food that her volume intake was so much greater than what she put out. Her kidneys weren’t working. She was only allowed 2 Tablespoons of water every 2 hours. Her mouth was so dry and chapped lips that were cracked and bleeding. Ice water was her all time favorite drink, and we couldn’t just let her have what she wanted so she could be a little happy.

Unfortunately Elaine did not receive a new heart. There weren’t any other options for her at the time. The Pediatric LVAD (Left ventricular assist devise) had not been approved/developed for infants and children. She may have been able to hold out had she had other options. Elaine had many problems while in the hospital. We watched her be intubated one last time, injected with all kinds of drugs to keep her heart beating. After five weeks in the ICU, there was nothing more to be done. She passed on April 19th, 2004, one day before her third birthday, in the loving arms of her Father, holding her mother’s hand. She was not conscience when she passed. We like to think that she merely woke up in a different place that night.

It is still unknown as to why she went into heart failure and why it was so rapid. We miss our darling daughter very much, but are comforted by the knowledge that we will see her again. She will be in our thoughts everyday until that day. She was so brave and strived to be pleasant while she felt so terrible. We are thankful for everyday we had her in our lives, and for the great lessons she taught us. Death is not the end, but merely a step towards everlasting happiness.

A heart child comes with stress, problems, meds and all kind of things you never knew existed, but along with all that is the love and tenderness that is so abundant with that child. We are thankful and blessed to have had Elaine in our lives, even for such a short time. We love to talk and laugh about her, and remember her smiling face.

It has been almost 10 years since Elaine’s death. Sometimes it feels like yesterday, but most of the time it feels as though it has been an eternity already. Her sister Violet is heart healthy, and she now has a little brother, Ashton, who is also heart healthy and another sister Myra who is heart healthy, and a second heart healthy brother, Vaughn. Our greatest concern is that more isn’t being done to raise awareness about CHD’s. It is a real thing that people struggle and live with everyday. We want people to know what to look for, have babies adequately tested when they are born, and have medicine advance so the heart kids are given more of a fighting chance. Please know that we promote awareness for others, for the increase in knowledge and the benefit of human life.

Darin & Melissa Andrew

(Written in 2007 in an effort to help raise CHD awareness)

Revised 2009, 2011, 2014

In reading this story about Angel Elaine, I came to realize, once again, how each of us has a mission in this life. I believe that for Elaine and her family, it is to raise awareness about Congenital Heart Defects. 

My name is Jenny McKinney. No other words are needed this day except- how blessed heaven is to have this Angel Girl.

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.