November 4, 2014

Favorite Family Photos of 2014

Some of my favorite family photos from 2014:

(Heart Week Event)

(Easter Egg Hunt)

(Boys' Great-Grandparents' Farm)


(Lake Keowee, Sky Top Apple Orchard, Clemson University)


(Halloween Trick-or-Treating)

February 3, 2014

Some Heart Stories & A Call to Arms

Ayden is "rockin' his scar"!
Since Ayden's Fontan in June 2012, our interaction with the heart world has been sporadic. Maybe that was subconsciously intentional. Maybe we needed a rest. Maybe we weren't ready. Maybe we just needed to live our lives. Or maybe we needed the right opportunities, opportunities God placed in our laps when we weren't even seeking them.

Our six-year old buddy, Blake, his twin sister, Lauren, and their parents, Kyle and Christie, moved back here in the fall. We met Blake and his family in the hospital when Blake was recovering from the Fontan procedure, and Ayden was recovering from the Norwood (2010). Since that time, Blake had been struggling with a condition called PLE (protein losing enteropathy), a rare possibility for hypoplasts post-Fontan. As a result of his struggle, Blake was no longer thriving, and he was placed on the transplant list.
Ayden, Blake, and Lauren at the twins' sixth birthday party
On Blake and Lauren's sixth birthday in November, the twins both secretly wished for Blake to receive a heart. The next day, while Blake was still outpatient, Blake was offered TWO hearts. Blake went into surgery for his new heart, and he has been "thriving" ever since. He is gaining weight. He is energetic. He eagerly awaits rejoining his sister at school. We are all so grateful to the family who gifted Blake with a new life.

For as long as I can remember, I have marked on my driver's license that I wish to be an organ donor. After Blake's heart transplant, I remarked my license (it had faded), and I signed up for organ donation on I want to encourage each of you to give the gift of life through organ donation!

Jana, Justin, Allison, & Bryan
After the New Year, Bryan and I attended a wedding on Long Island for Bryan's childhood best friend, Justin, and his lovely German bride, Jana. Bryan especially enjoyed time spent with Justin, and he was honored to speak during the wedding ceremony. I loved meeting Jana and her friends and family. I probably spoke more German that weekend than I had my entire life, two summers in Germany included. Due to the "Polar Vortex," we got stuck a few extra days in New York and even got to enjoy some time on Manhattan. We had a great trip, and all that I have mentioned is noteworthy and precious; however, one of the most awesome parts of the trip was the gesture Jana and Justin made at the wedding reception in honor of Ayden:

Ayden crashed to ECMO in June of 2010. As a result, he was given a Beanie Baby lamb from the ECMO team. ECMO was originally tested on lambs before used on people. The ECMO Beanie Baby lamb remained by Ayden's side for the duration of his stay in the hospital, sometimes used to prop him up or give him comfort.
Ayden on ECMO in June 2010
Today the lamb is in Ayden's bedroom. He says the lamb is "so sweet."

In lieu of wedding favors, Justin and Jana made two donations to Vanderbilt Children's in honor of Ayden: 1) They gave Ty Beanie Baby lambs to the ECMO teams, so more children will be able to receive the lambs (this particular Beanie Baby has been retired); 2) they gave a monetary donation to the hospital.
We are truly grateful for Justin and Jana's thoughtfulness. I have cried several times over this act of kindness. You should have seen me at the wedding reception; I was a tearful mess! But it was a good mess. A sweet mess.

Jacob's family came to Vanderbilt expecting thirteen-year-old Jacob to have a simple valve repair. Once in surgery, the cardiac team couldn't believe the condition of Jacob's heart; they couldn't believe that Jacob was even able to walk into the building. 

"Jacob is VERY SICK." 

When Ayden crashed to ECMO, I remember the surgeon's nurse coming in to a tiny room of family and friends to tell Bryan and me those very words: "Ayden is very sick." No one wants to EXPERIENCE those words. No one.

And yet, we were telling Ayden those very words, as he prayed every evening for thirteen-year-old Jacob and his very sick heart. 

When we told Ayden that Jacob was going to receive a new heart to replace his sick one, sweet Ayden jumped up and down, exclaiming, "Jacob is going to feel so much better!"

Though we had been praying for them for weeks, I didn't officially meet Jacob's family until the evening of Jacob's transplant. Christie (Blake's mama) and I got to the hospital around 9PM and left around 11PM. Jacob's heart was still being sewn in as we were leaving. He had been in the OR since that morning. It had already been a long journey for the family, and it was proving to an even longer day. I was inspired by their hope, in spite of the fatigue and emotional torment. I found them to be kind and Godly, patient and honest, joyful and thoughtful. They were easy to love.

In the next couple of days, Jacob fought valiantly. The medical staff fought just as hard. The Body of Christ was fighting in prayer. When Jacob left this world, I wept bitterly.

After 200+ days of living at Vanderbilt and in hospital housing, Jacob's family returned home. They have since buried their son's physical body, honored his life with ceremony, and set up a fund to further cardiac research. (Jacob Sprinkle Memorial Fund; c/o Commercial Bank; attn: Michelle Huddleston; P.O. Box 400; Harrogate, TN 37752)
Jacob and his younger brother Daniel
(photo taken a few Christmases ago)
On the day Jacob went to heaven, Jacob's father, Rick, wrote the following powerful Facebook entry:

"1 The LORD is my shepherd, I shall not be in want. 2 He makes me lie down in green pastures, he leads me beside quiet waters, 3 he restores my soul. He guides me in paths of righteousness for his name's sake. 4 Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. 5 You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. 6 Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the LORD forever. From the 23rd Psalm.

By now news has spread to some. Jacob now walks with God. His Aorta split open and the doctors despite all of the best heroic efforts were not able to keep him on this Earth. He IS with God now. He has a perfect heart and a perfect body. For those of us that knew him, he will live with us forever. He will forever be in our hearts. We have been blessed to have him.  

He NEVER NEVER quit. He fought to the very end and never surrendered. He never shed a tear. It is almost like Jacob knew before we came here, something that we didn't. He asked if we would burying him next to his Nana. He is the bravest and toughest young man I have ever known. No words I can say can do him enough honor.

Monique and I offered his organs for another as well as his tissue. Due to the acute blood loss, he was not able to donate. We tried.

Please continue to pray for Luke Reaves, he is the last of the VAD BOYS that all got here together. We need him to go home in good health with his Mother and Father. Do not forget to continue prayer for all of those that we have asked prayer for.

Jacob will be meeting a man in Heaven tonight named Jim Morrissey, an Old Marine and the father of one of my very best friends. He went to Heaven today also. Pat Morrissey and I will be bound by this date for the balance of our lives.

I close this night with one of my favorite readings from D. H. Lawrence - "I never saw a wild thing sorry for itself. A small bird will drop frozen dead from a bough without ever having felt sorry for itself.” Our Jacob NEVER once felt sorry for himself. I have never been more proud in my life.

Love and The Peace of Our Almighty God be with you tonight.


We knew Ayden would ask about Jacob. We were prepared with our answer. We just weren't prepared for Ayden... 

I told Ayden that Jacob's heart didn't make him feel better, that Jacob remained very sick, that the doctors couldn't help him feel better; as a result, I explained, God took him to heaven to take care of him, and now Jacob feels awesome. Ayden had several questions: "Why can't he go home with his mommy and daddy?" or "Does he live in a castle now?" After we worked through his questions, I asked Ayden if he understood about Jacob. Three-and-a-half-year-old Ayden responded, "If my heart gets too sick, I have to get a new heart. If my new heart doesn't work and the doctors can't help me, God will take care of me in heaven." 

We never spoke to Ayden about Jacob's heart in the context of his own heart. In fact, we don't ever speak about Ayden's heart in Ayden's presence. Ayden doesn't even know his heart isn't like a lot of others', YET he responded to me with self-application! I surprisingly didn't cry by our son's response. I was in such awe of how grown up he is, how innocent he is, how smart he is, and I was so proud of him in that moment. An eternal moment. Jacob's life gave us that moment.

On the heels of Jacob's passing, Christie (Blake's mother), Diana (Jude's mother), and I met with a couple expecting twins. One of the twins has been diagnosed with hypoplastic left heart syndrome, the same congenital heart defect that Jude and Ayden have and Blake had pre-transplant. The three of us shared our stories with the couple, and we tried to shower them with helpful tips and items, things we wished we had had when we went in to the hospital.

You see, it's hard enough to have a baby, to be nervous about parenthood, but when you add in the heart issues, there's an added dimension of hardships experienced, fears developed, and strength needed. When a couple gets pregnant, they take for granted that the baby is healthy, that things are going to be "like everyone else." And then the excited couple goes in for the 20 week ultrasound to find out if they are having a boy or a girl, and something isn't quite right, and days later, the little family has met with more specialists than they have probably seen in their entire lifetimes combined. It's easy to live in a fog, to not know where to take the next step, to feel SO helpless.

But there is Hope. We are so hopeful for others. We are so hopeful for our family. I have felt intense sorrow over the past few years, for our family and for others. I have also been immensely blessed.

I think Bryan and I are ready to use our story to help others. I think we are ready to be part of other stories, to be joyful in victories and to cry in struggles. Regardless of our readiness, I think God is telling us to "get ready!"

Congenital Heart Defect Awareness Week is February 7th-14th. Why is there an awareness week? Because congenital heart disease is the most common birth defect and the leading cause for birth-defect-related deaths worldwide. How common? Nearly 1 in 100 babies are born with a congenital heart defect. Congenital heart defects are actually 60 times more prevalent than childhood cancer. However, unless one has family or friends who have a child with a heart defect, one doesn't hear much about CHD. 

I recently read an article in Clemson World magazine about a Clemson family, Susan and Jason Smith, whose daughter, Emerson Rose, had hypoplastic left heart syndrome and went to heaven at 76 days old. Their experience led them to create the Emerson Rose Foundation. The organization provides awareness for CHD, support for families in the hospital, and funds for research. The Smiths are also affecting legislation to aid hospitals in detecting heart defects before newborns leave the hospital. They have gotten South Carolina Senator Thomas Alexander and Clemson Head Football Coach Dabo Swinney involved. When I read about the Smith family, I was saddened by their loss but inspired by their story, and I thought it was so amazing that I was reading about congenital heart defects in a Clemson magazine! People like the Smiths, whose lives were changed by CHD, are changing lives and making their story known to others.

Awareness is important to medical advancement. Awareness provides funds. Our family is grateful for medical advancements. Had Ayden been born before 1981 (the first successful Norwood procedure was performed that year), he would not have survived more than a few days. Had there not been ECMO, Ayden would have never seen a second surgery. Certainly, there is a need for research funds, for medical support, for family support, and for awareness. We will be fighting the heart battle for the remainder of our lives, both for our son and for other families. These children are worth the fight! If you are interested in helping in some way, please let us know. But most importantly, we all covet your prayers. God bless!

December 26, 2013

It's a Wonderful Christmas

Merry Christmas!