Still waiting…

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Many of you know our Matthew was born with a heart defect known as Hypoplastic Left Heart Syndrome. You can read some of the stories about him on our link here.
Heart families are very close, even if we don’t know them, we have been there and experienced the same stress and worry as they have.
When our first baby was born we couldn’t pin point what name to call him. He was a little man with dark hair over, two inches long and very thick. He was perfect. We counted his toe, his fingers, and just inspected him all over much like every other loving couple would do with their newborn baby. Shortly after he was born, with in hours, he was placed on oxygen and doctors struggled to start IV’s. Soon the doctors came in and broke our hearts. They told us the precious little boy we had just brought in this world might not make it. We were told he had half a heart and that we had three options:
Compassionate care – bring him home and hold him while he went back to his Maker.
Heart transplant – might not survive till a heart is available and even then it might fail.
Series of three major open chest heart surgeries that would totally change the function and lay out of all of the major plumbing and functions of the heart, and even then he might not make it.

Hypoplastic Left Heart Syndrome
Hours after birth, before leaving to Seattle

What was a new father to do? Do I do nothing and let him pass in my arms? Do I fly away to a distant hospital and wait and watch till another baby gave up their life for our son to get a new heart, only to have him die while waiting?
Or to fly away to a distant hospital to send my son to the surgery room and hope to see him come back to me after each surgery?
It was a hard choice. My wife still hurting with a torn and broken body from sacrificing herself for our baby, cried in my arms. The doctors sitting their struggling to describe the procedures. With the memories of their own child who passed with the same heart condition.
And here laid this sweet smiling boy who I knew was to be here with us, but still had no name. What do I call this child? I didn’t want him to pass with out knowing that we named him. I never in my life thought I would call some one after my name. I didn’t think he would survive, but want him to know that I loved him. So I named him after myself. He was to be my little Matthew. Off we flew to a distant hospital, leaving my wife in the hospital with a broken body of her own. It was me and my Matthew. He was starting to swell as his heart failed and retained fluid. He had IV tubes every where. In both arms, legs, and 3 into his belly button. He looked like a rag doll, limp and bruised. I would try and hold the only skin I could wiggle my hand in between all of the tubing and wires sticking off of my son. I sat there alone in the neonatal hospital room, in a daze as doctors came in in out and tried talking to me about what the plans were. I felt lost with out my wife. I knew I need to do something. I knew that if I did nothing, that some how I would feel as if I let him down.
The surgeon approached me and explained in detail what the surgery would do. He explained each of the three major surgeries. He told me my son was not a candidate for the procedure because he was so sick. I stopped him and told him that I did not want to do nothing. I explained that either he was going to die in my arms in the distant hospital room, or he would die on the surgery table and I was fine with that, because I knew in my heart I tried.

They wheeled his bed into the operating room. I stood there alone watching him disappear behind closed doors. Seconds after the doors closed Sarah was wheeled down the hall towards me. She sat in a wheel chair still recovering from the quick birth. They scrubbed her in and pushed her in to the operating room for possibly seeing him for the last time alive. And we waited..

Before each of the procedures, Matthew was not a candidate in the surgeons mind. That he had seen healthier kids die during surgery, and how was this sick little guy supposed to survive? Each time I told the same surgeon who had always worked on our Matthew that I was prepared for him to die on the table, but that I wanted to “try”. And we waited for our son to come back from each surgery.
After 15 surgeries, our little boy is still here with us. We are always asked what his future will be. Each time we say that he will never be a track star, that he is small and tiny for his age, that he gets winded with activity. Each time we say that many of these kids end up needing a transplant.
We are waiting still. Not to see him after surgery but waiting for his heart to weaken. Every night we wonder if he will wake up in the morning. Many families worry about what clothes they need for their kids events they are in. Many worry about if they will grow up to be doctors. We worry if he will simply grow up. Will he make it. Will he survive to be married and have children?

Below, Paul, has the same heart condition as our Matthew has. He recently finished waiting and had to go to the hospital for the transplant of his sick and tired heart, and received a special rebirth into life with a new heart. He is a talented musician and we love his music.
Quoted from his blog:

He is a talented Award winning pianist, lecturer, and author Paul Cardall has entertained sold out audiences and inspired people worldwide. His latest studio album titled “New Life” debuted as the #1 Billboard New Age Album in February 2011.

Born with essentially half-a-heart or a form of congenital heart disease, Cardall was given only days to live but defied medical expectations, enduring a series of surgeries and illnesses throughout his lifetime. After receiving a heart transplant in September 2009, Cardall wrote a memoir chronicling his experience, “Before My Heart Stops” published by Shadow Mountain.

After receiving his heart transplant, Cardall established The Paul Cardall Family Foundation for Congenital Disorders and created an endowment at Salt Lake Community College providing an opportunity for students born with abnormal birth defects, who have mounting medical bills, an annual full ride scholarship.

Spring 2011, the state of Utah and Salt Lake Community College awarded alumnus Paul Cardall with an honorary doctorate of humane letters at their 2011 commencement. Previously, he was honored with the distinguished alumni award.

In addition to his successful music career and writing career, Cardall is a much sought after public speaker.

Check out one of his songs below call “Before My Heart Stops”

And visit his site and get your own copy here

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