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Interrupted Plans- The Journey with Hyperinsulinism Begins - ATWD a thing worth doing - a blog by Daniel Webster - worship, ministry, and culture

Interrupted Plans: The Journey with Hyperinsulinism Begins

The wise, ancient sage said, “The heart of man plans his way, but the Lord establishes his steps” (Proverbs 16:9 ESV). Without a doubt, Kimberly and I were witnesses of God’s providential hand in the life of his children—this particular moment took place as we prepared to leave the hospital after the birth of our first son. The following events would mark the beginning of our battle with congenital hyperinsulinism, a rare genetic disorder of the pancreas which causes blood sugar to constantly bottom out to dangerously low levels.

A New Baby Boy

By noon on discharge day in the maternity ward of our hospital, we were loaded and ready to go home. After a bottle and diaper change, we laid three-day-old Aaron down to rest in his hospital-style bassinet. All seemed well. Our nurse began reciting our lengthy discharge instructions. The typical don’t drive for six weeks and watch the baby for a temperature kind of info. I zoned out as the directions were given. After all, we had been at the hospital for ninety-four hours, and I was ready to get out of there.

It had been a very long three days. Aaron was nearly eleven pounds, so the entire labor and delivery had taken some unusual turns. The doctors were concerned about some things, especially with Aaron’s blood glucose. That was a cleared up now. We thought . . .

As the discharge nurse continued, I was thinking about how I never wanted to sleep on another pull-out hospital bed again. I snapped back to reality when she said, “Dad if you want to pull the van around, I’ll get Mom a wheelchair.” Wanting to stay with Mommy and Baby, I delegated the van task to Kimberly’s parents. They left with the nurse. Kimberly had a few more things to do before we could leave, so Aaron remained asleep as I hurried her along

A Knock at the Door

My plans of getting home after this strenuous hospital stay were interrupted by a knock at the door.

It wasn’t the discharge nurse, and it wasn’t the wheelchair; instead, it was Freya, the lactation consultant. She asked how everything was going, and I told her we were fine. “I don’t think we’re going to need your help.”

This didn’t stop her. She suggested that Kimberly stay a few more hours so she could make sure the baby was feeding correctly. What could be so hard about feeding a baby? We’d already been doing it for a few days. She insisted we stay; I insisted we go. I could tell by Kimberly’s eyes that she too was ready to go. Freya still insisted we stay, and, as God would have it, Freya won. We stayed. As the in-laws grabbed lunch, the nurse put a hold on the wheelchair. I rolled my eyes as I overheard her telling Kimberly that everything she had done was wrong. “Where were you when we were feeding him yesterday?” I grumbled under my breath.

A Sprint Down the Hall

At Freya’s direction, I lifted Aaron out of his bassinet and began waking him up for his meal. He was very still. “He must be as wary of this place as I am.” I handed him to Freya and mentioned that he seemed tired and not interested in eating. She gruffly grabbed him from my arms with a worried look: “I don’t like his color!” Freya, who was a newborn nursery nurse before she became a lactation consultant, dropped him on the bed and began slapping his feet and vigorously rubbing his back. My thoughts went to the operating room nurses who did this during the C-section when Aaron had been blue from a lack of oxygen. “Come on, Dad, we’re going to the nursery.”

By the time we made it up the hall, Aaron was beginning to turn gray. I was white with fear. Before I knew it, they were calling the doctor on call and kicking me out of the nursery. Eventually, they stabilized Aaron and transported him to the Children’s Hospital where he would spend the next three weeks of his life. Aaron’s blood sugar had dropped below twenty, which caused him to have a seizure and stop breathing.

An Unexpected Diagnosis

Later, we also learned that the doctors in the nursery had resuscitated Aaron three times. Our journey had only begun. Aaron would later be diagnosed with a rare blood sugar disorder called Congenital Hyperinsulinism. This hereditary disorder would lead to many more blood sugar lows, a 98% pancreatectomy at the age of six months, and thousands of finger pricks and insulin shots.

If I had insisted on having my way, Aaron’s journey would have ended that very day. My way would have been to unknowingly place Aaron in his car seat, load him in the van, only to arrive home and find my son dead in his car seat. While I devised my plan, God guided the steps of everyone at the hospital that day.

Every day I am thankful for Freya’s insistence and medical discernment; I am most thankful for God’s providence and involvement in the lives of his children. This is truly a miracle. God interrupted my plans, guided the steps of a lactation consultant, and spared the life of my only son.

The heart of man plans his way,
but the Lord establishes his steps.
Proverbs 16:9 ESV

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Daniel Aaron Webster - blog a thing worth doing - worship, culture, ministry - early Christian music

Daniel Aaron Webster is a minister, writer, and teacher. His primary research interest is early Christian music, especially the musical thought of Clement of Alexandria.

Daniel serves at Welch College as Director of Enrollment & Marketing and as Adjunct Instructor of Music & Theology. He is also the Associate Pastor for Music & Worship at Immanuel Church in Gallatin, TN. 

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