It was Christmastime and we were anticipating the birth of our first child. After having been married for five years, our little “baby Shu” was much anticipated as the first grandchild on both sides of our family.

 

My pregnancy had gone beautifully. We sailed past our due date without much concern then finally, it happened, the contractions began. The birth progressed without major complications and we were all so excited. When baby Shu emerged our world changed forever… he was born without a heartbeat or breath, he did not move or cry.

 

Emergency measures began right away and before we knew it we landed in the Neonatal Intensive Care Unit. Our son, Levi, had been born with severe brain damage. Every region of his brain had been profoundly impacted and there was question if his brain stem would function property. We were told by the Pediatric Neurologist he would not have the reflexes to clear his airway (suck, swallow, gag, choke, cough), his quality of life would be very poor and there was nothing they could do to improve his situation. No medical reason could be given for “why” this happened. Nothing could be done to "fix" the situation. 

 

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It was an understatement to say that Levi’s prognosis was uncertain.

We began a CaringBridge site and soon people from around the world, most of whom we had never met, began praying for Levi and for us as parents. With our CaringBridge community we celebrated each tiny milestone, held off discouragement in the setbacks, and prayed specifically. Day by day we posted updates as Levi's life slowly began to unfold.

 

It was in these first fragile days we discovered Levi to be a teacher. He embodied the radiant power of love, why faith in God is essential, the balance of hard work and deep rest, the unity of community, and that the miraculous is possible.

 

Miraculously, after three long weeks in the ICU we had the opportunity to go home. We were elated and fearful. How would we manage as first time parents of a child with significant medical complexities? 

 

Levi’s prognosis continued to be very uncertain and most doctors anticipated he would soon die. We as parents had a much different anticipation, for our little Levi had already beat the odds. No question what lie ahead was going to be challenging for all of us and, by faith in Christ, we anticipated a hopeful outcome for Levi: a life full of love and joy. We committed to loving him deeply, giving him the best care possible and cherishing each moment as a gift of God's grace.

 

The golden gift of Palliative Care

Thankfully the NICU physician helped us connect with a pediatric palliative care team who helped us make the transition home.  This turned out to be a live-changing, life-giving game changer in our family.

 

Never did we imagine that bringing our first child home would transform it into a "medical home." Oxygen tanks, medications, medical supplies... now filled the spaces we had set aside for toys and drawers for baby clothes.

 

Our world changed dramatically. Our palliative care team literally met us at the door upon our arrival home. Day after day they returned to help us navigate Levi's very fragile life and intense medical needs.

 

Palliative Care

+ helped us identify our values and learn how to translate them into medical decisions for our child

 

+ connected us with vital resources and encouraged us to find ways to "be a family" in the midst of the intensity of Levi's medical cares

 

+ taught us, by example, the importance of being fully present with Levi, no matter how good or bad his day was going

 

+ was available 24/7 to answer our questions and navigate the inevitable middle-of-the-night emergencies

 

+ championed our becoming Levi's experts and greatest advocates

 

+ supported our spiritual needs and recognized our need for respite

 

+ provided care coordination and helped us navigate the diverse opinions (and personalities) of Levi's long list of medical specialists. 

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