Red Vine Spirituality

Taylor K. Arthur balances Bipolar 1 Disorder, marriage, and motherhood with a nitty-gritty faith inspiring a twisted, blissful life.

Sam-kicker’s ever-evolving, miraculous story

“God has heard, announce, proclaim!” Sam-kicker’s ever-evolving, miraculous story . . .
But the Lord said to Samuel . . . “Man does not see what the Lord sees, for man sees what is visible, but the Lord sees the heart.”
1 Samuel 16:7

For those of you who don’t know our family, I will give a little back history on our Sam-Kicker . . . Sam is our third boy, and surprised me when, at 16 weeks, he kicked harder than either of his older brothers had. We were shocked, then, at Sam’s 19 week body scan, when we learned that something may be wrong with his heart. I told the doctors, “I find that hard to believe as he feels like my strongest baby yet!”

We had little to go on until a 21 week echocardiogram, which revealed an extreme case of Ebstein’s Anomaly, Pulmonary Atresia, and at that time, insufficient arterial blood flow to his lungs. This meant that not only was his Tricuspid valve pinned to the walls of his underdeveloped right ventricle, allowing blood to go in every direction in and out of his heart every time it pumped, but also that the blood that should be going to his lungs (insufficient as it might be) was not being able to pass through his pulmonary artery. A day later, we were told that they thought Sam’s condition was fatal. They prepared us for him to go into cardiac failure in utero, and for the possibility that my heart would be compromised as his failed.

We believe that every child has a purpose and a lesson to teach, and as scared of the dismal picture being painted for us–and of burying our second son in four years, and of Sam’s big brother surviving as an only child of three, and of my life being endangered–we saw God’s hand moving from the very beginning.

Ten years earlier, I was diagnosed with a severe case of Bipolar 1 Disorder on April 28, 2001. At the time of the diagnosis, my marriage, college career–my entire life–was over. I was so sick and so handicapped by my illness and the drugs I took to treat it that the idea of functioning “normally” again–professionally, relationally, mentally–seemed impossible. And yet, by the grace of God, my life was resurrected from, literally, ashes. So when the scheduler called to ask if April 28, 2011 was a good day for Sam’s diagnostic echo, I knew God was trying to get my attention. At the time of his diagnosis, I held to the fact that a God of perfect details was orchestrating every detail of my son’s life just as he had orchestrated every detail of my own. The illness that could have ended my life (on so many levels) has become manageable and treatable. I believed that was what God had in store for Samuel as well.

Also, Sam’s name was picked before he was conceived–“Samuel Scully”– before there was an inkling that he would be given his special heart. “Samuel”, of course, was given to Hannah in 1 Samuel after she prayed for a child, and means “God has heard”. “Scully” is Samuel’s daddy’s father’s (“Papa Mark”)’s, middle name. Papa Mark died suddenly in 2009, but miraculously lived thirteen years past what doctors had predicted his life span would be. Despite serious medical challenges including juvenile onset diabetes and juvenile cancer, Papa Mark lived a long and full life, married to Jack’s mom for thirty-five years, fathering three boys, all while moving up the ranks in a life-long career in Nordstrom receiving. “Scully,” means in Irish, “Herald,” and in Gaelic, “Town crier.” Sam’s name literally means “God has heard, Herald/Town crier (an official announcer or messenger or harbinger.) Or, “God has heard, announce, proclaim!”, and honors the memory of proud survivor, Papa Mark.

There are many, many more details, some too private to include. But, there has never been a moment since Sam was diagnosed that I did not believe firmly that there was a plan bigger for him than what one echocardiogram could predict. On Divine Mercy Sunday, we went to our priest Father Ed (who had also baptized Caleb and Abraham, and been present at Papa Mark’s death) for prayer. As he annointed my pregnant body with holy oil, Father Ed told us, “You know, sometimes doctors are wrong . . . ”

We received a second opinion at 25 weeks by a wonderful cardiologist at Swedish hospital, Dr. Kimberly Krabill. She looked at the scans, at a baby not going into cardiac failure, and gave us hope. We continued through the pregnancy week by week, as Sam grew and kicked and continued to live.

Gratefully, Sam was born alive in August 2011. I got to hold him for only a moment after he was born, kiss him on the forehead, and he was whisked away by NICU staff. That night, as I stared at his little body fighting to breathe, and watched his saturations dropping because of the medication he had been given, I can honestly say I experienced fear and helplessness in a way I had never before. They ushered us out as they intubated him, and I waited in my hospital room two floors away to see how he would fare. It was torture.

The next day, he was transported to Children’s hospital via their very special ambulance, all safe and secure in a traveling incubator. The traveling team consisted of two men and two women. Both men were named David. I chuckled out loud and looked at Jack: “Of course God would send two Davids to get a Samuel.”

After two and a half weeks in the NICU at Children’s Hospital in Seattle, he underwent a catheter procedure in which a stent was placed to allow his heart another pathway for blood to be oxygenated. We went home with our sweet and fragile baby boy days later, and expected to be back in the hospital soon after for surgery. We cocooned our family in as much of a germ-free environment as possible, and I cleaned endlessly until he was old enough to receive immunizations and be a little more protected.

That was 20 months ago, and it is just now that Sam was back in the hospital because his original stent was closing in conjunction with a nasty virus that resulted in lower than acceptable oxygen levels. His stent was ballooned open after 9 days waiting to get over the worst of his virus, and we returned home again a day later. We are now waiting to find out when he will have a Glenn surgery, which is an open heart “bridge” surgery

In the past twenty months, we have watched Sam grow from a mere 5 lbs, 11 oz to a very short but solid 22 pounds. We’ve watched a child who they told us could be aborted at 22 weeks in utero become a best friend to his older brother, a living miracle to us. Sam loves trains and cars, throwing anything that looks like a ball, bath time, and has a voracious vocabulary. He loves “outside,” especially when he finds a way to dig all of the dirt out of my planters or mutilate the tulips.

Jack and I feel extremely blessed to have Samuel for a son, and for the chance to walk beside him in this amazing–sometimes terrifying–adventure. We truly believe that Sam’s special heart was crafted by our Creator for a very special purpose. AMDG, Ad Majorem Dei Gloriam, “For the Greater Glory of God . . . ”

Update, July 2014: Sam underwent a successful Glenn procedure last year, and is currently very stable. He is starting preschool in the fall. We have been very grateful to live more of a normal life since his surgery, as he is no longer considered high-risk.

2 Comments

  1. I just wanted to say that your blog really touched a nerve. I was also on Lithium for years due to Bipolar Disorder, and my little girl Hope also has Ebsteins Anomaly. She is nearly 4 now and we are waiting for her Glenn procedure. Thanks for your blog. x

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