24 hours after 300 miles in a 21-year-old car …
Our son had to be born in Portland, Oregon. There were medical reasons. We live 300 miles south. It isn’t possible to just hop in the car. If our son were born in our town, it would mean an airlift to Portland.
We decided to go to Portland early. Two weeks ahead seemed reasonable. Percy’s due date was December 18. We’d roll into Portland on December 1. The plan was to induce on December 13. (At this fine hospital.) The plan would leave a couple of weeks. We could meet with friends. Go Christmas shopping! Maybe we’d take our first son to the zoo.
It wouldn’t happen that way. Not when contractions began a few hours after we arrived in Portland.
A long stay in another town
We packed more than a few suitcases for our trip. We expected to be in a hotel for a while. As related in a previous post, we knew our son had special needs. Specifically, Trisomy-21, more commonly known as Down syndrome. Being born was just the beginning for Percy. He would need to go through surgeries and observations.
Did we bring enough? Maybe we’d pack one more sweater and another toy.
It’s amazing how fast duffel bags fill up an SUV.
Our ride was a Ford Explorer that was 21 years old. It had 220,000 miles on it. We hoped it had 300 more miles left in it. There was a snowy pass to cross. It wasn’t our SUV. We didn’t own one. We had been waiting on another loaner vehicle (which was built in this century). It wasn’t available. Busted heater. We headed out at 2 p.m. in our Plan B vehicle. We had to make it to Portland by 11 p.m.
Crashing with Ronald McDonald
Our final destination was Ronald McDonald House. Yes, it’s a real thing. You’ve seen the donation notices for RMH at your local McDonald’s. We didn’t know the story either. It turns out, RMH is more than legit. Ronald McDonald’s House is 10x more wonderful than large fries, fresh from the fryer.
RMH is more than legit. Ronald McDonald’s House is 10x more wonderful than large fries, fresh from the fryer.
Our son had a birth condition. It made us eligible for Ronald McDonald House. This amazing charity offers a free room for as long as needed. If you’ve been to Portland, Oregon lately, it’s expensive. Portland is the next San Francisco. Hotel rates are insane. We could be in Portland for six weeks-plus.
Only, we needed to arrive at the House by 11 p.m. that night. Otherwise, we’d lose our reservation. I pushed the 21-year-old SUV harder through a mountain pass. The play in the vehicle’s steering wheel was ridiculous. I could’ve been steering a boat on choppy waters. It got dark, rainy. We checked our watches.
Out of the frying pan …
RMH occupies a floor of a hotel near the hospital. At around 10:45 p.m., we climbed out of the SUV. Only minutes to spare. It wasn’t the only close call we’d endure. Our plan of a couple of weeks of buffer before Percy came went south. My wife felt contractions just hours after we arrived.
We did want to meet our new son. Just not so fast! There was a financial reason to wait a couple of weeks more. It had to do with insurance coverage and my wife’s maternity leave from her job. Only, our baby had other plans. He was to be born on December 2.
Contractions can be sometimes serious, sometimes not. We waited a bit. It wasn’t a false alarm. These were serious. By the time we arrived at OHSU just a few miles away, we were pretty far along. There was no time for the usual pleasantries with the hospital. No time even for an IV. My wife had the baby …
Percy Eugene Havens
Our son was born quickly. Within 20 minutes of causing a major fuss, here he was. My wife and I were presented with this little purple being. He was still crouched in a previously-comfortable position.
We didn’t know what to say. He was incredible. Then he was whisked away by nurses. Because of his health issues, the nurses were on a mission to get him into the NICU. I followed them down the hall to where new babies were prepped. I snapped the main photo at the top of this page. Our son had a presence. He looked directly into the camera (phone). He seemed to say, “I’m here. I wasn’t about to wait another two weeks.”
He was what we were expecting. (And much more than we were expecting.)
Confirmation and more
Our son had been diagnosed with Trisomy-21. Right at birth, we saw one sign. His eyes were a bit slanted. There were certain expected signs of Down syndrome you read about. And yet, Down syndrome showed up differently in each person. Percy’s palms had a usual double crease, not the single crease they told you was prevalent.
I asked the nurse. She said, yes. He does have it. There were indicators. His first toe was further from his second. It was called “sandal toe.” There was a bit more skin at the back of his neck. He had a flatter bridge on his nose. His ears were lower on his head.
We’d been told so much about Down syndrome. It was natural to want to see what it meant visually. I was glad to get the curiosity out of the way. He was here. He was amazing! I was overjoyed by him. He was our Percy. We had waited a long time to meet our special boy.
Back to the delivery room!
It took a moment to remember. My wife Iris was back in the birthing room. She was recovering. My wife’s mother had just arrived from the 300-mile drive. They were there together.
I remembered our first birth was similar. Father gets to see the baby. Mother catches her breath. Our Percy was brought in soon after. My wife was able to meet him, to see the baby she had been carrying for so long.
Before the birth, we had both been excited about his arrival. Also, we were a bit apprehensive. Our first doctor was cautious. The specialists were more positive. We didn’t know what to think. Mainly, we’d never spent time with a baby like Percy before. Our first meeting with a baby with Trisomy-21 would be our own son.
Onto the NICU
It wasn’t as simple as meeting our son or taking him home. There were medical hurdles. We knew it going in. He didn’t. It would be an interesting welcome for him.
More than quickly, Percy was taken to the 12th floor of the hospital. It was where the Neonatal Intensive Care Unit was located. Percy’s first home.
Percy would join many other babies in various stages of distress. Most of them were born prematurely. Percy was considered a term baby. It was his status of Trisomy-21 that gained his admission into the NICU.
The doctors had prepared us. Our son needed two surgeries, perhaps right away. There was a heart defect. They would try to postpone that surgery until Percy was older and stronger.
Percy had a gastrointestinal issue that needed to be fixed right away. Until his stomach was repaired, he couldn’t eat by mouth. He would receive nutrients from his IV. A tube would have to stay down his throat to suck up stomach acids. Doctors didn’t want anything passing through his digestive tract.
My wife was now checked into the proper room. We were supposed to deliver there but Percy came too soon. It turned out, Iris had delivered Percy in a small examination room! Now we were ready to see Percy in the NICU. We found out he was pretty little. His birth weight was 6 pounds, 7 ounces. We could look at him but not pick him up. Percy was attached to a lot of wires and tubes.
Special, not a cliché
We knew our son was different, genetically. it was a fact we wouldn’t dwell on, or try to minimize, either. Whatever differences there were, we’d embrace We’d also learn to understand them.
We had claimed a Bible verse for him.
For we are God's handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do Ephesians 2:10
We believe Percy was created the way he was for a reason. There are a lot of powerful stories about Trisomy-21 kids that confirm this. We each have gifts. Some are obvious, others are latent. Percy would have both kinds. Whatever challenges his difference caused, he would be an example of the grace of God. “My strength is made perfect in weakness.” Percy’s life would bear that out.
Part of Percy’s journey was enduring surgery at such an early age. Only, the news got better. He wouldn’t need heart surgery right away. Percy would need intestinal surgery. Two days after Percy was born, we left the hospital and returned to Ronald McDonald House. We would need to leave Percy in the NICU and make visits.
The gastrointestinal issue was operated on. The doctor went in laparoscopically. For newborns, it was a recent advancement. Percy’s incision would be less severe. Even so, we watched our son recover on a ventilator.
It was hard to see him look so lifeless. The narcotic anesthetic was strong. Fortunately, the ventilator was gone after a day.
Percy’s surgery at three days old was a success. Now, it was about getting him to eat enough. By the time he took his first milk, it was two weeks after birth. It was a milestone worth celebrating. Life of a baby in the NICU is different.
A matter of perspective
The neonatal intensive care unit is full of serious health issues. We removed ourselves of the good parts of Percy’s health. Our son will have a lifelong genetic issue. Yet, he is physically intact. Many infants in the NICU are in a reverse situation. They’re genetically fine but they have overwhelming health problems.
We got to know other parents in the NICU. The problems they faced were both inspiring and discouraging.
Water on the brain. A tracheotomy. Severely premature. Lung issues. Babies with little brain function. It broke our hearts to see what normal was for these parents. The decisions they needed to make were unfathomable. The patience these parents needed to get from one week to the next made our situation seem light and easy. Each of these families had great faith in God. For each of us, we learned as we went. Every day would bring a new challenge. It would offer a new level of understanding.
Our little guy
For us, a refrain leading up to his birth was: we don’t want our son to be a diagnosis. A prenatal condition had an overshadowing effect. It casts the baby as a crisis, not a joy. We tried to let people know, we didn’t see his medical condition as bittersweet.
Even still, a heavy reality of a permanent condition made us feel a bit uncertain. The moment we met him, all uncertainties melted away. It was natural, automatic. We were taken by him.
We went from hesitation to impatience. When could we bring him home? When would we get the green light? As of this writing, we’re still in Portland. But we have him.
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The birth of every child is unique. Let us know yours. Did you need to leave your newborn at the hospital in the NICU? Were there complications that took patience to see through? How did you cope? Could you find joy within the challenges?
This post first appeared at The Joyful Father.
All photos © Eugene Havens