– Non-Fiction by Terry Engel – March 26, 2019
Lisa worried her way through the second round of in vitro and the resulting pregnancy with Stella and Jackson. Our first in vitro pregnancy had been twins, though one died en utero and the second was a thirty-one week preemie who spent six weeks in the NICU. I spent a lot of time with Julia Rose, a healthy two years old when Stella and Jackson were born. I couldn’t help but feel confident. The problem with Julia Rose and Hayden’s placenta was an aberration. The ultrasounds and other checkups were positive—I ticked off the weeks, counting down to the magic numbers. At the time, at 26 weeks a fetus’ chances of surviving become realistic. At 32 weeks the lungs are mostly mature enough that survival with few long-lasting complications becomes highly probable, and at 34 weeks most of the complications of pre-term birth should be minimized. A 34 week preemie can feed from a nipple rather than through a tube, and his nervous system is developed enough to stand the stimulation of being outside the womb in the noisy bright world. Once we got to 34 and Stella and Jackson were ready to be born, I was ecstatic. I recognized that there were still dangers, that there would be physical and developmental catching up to do, but I was naïve enough to believe that our dues had been paid with Julia Rose and Hayden. Once we got to 34 nothing could be as bad as what we had already been through.
Lisa’s water broke on a Sunday night in the thirty-fourth week, about 10:30, and we drove to the hospital. We had moved from Denver to a small town in Arkansas and had no family in town, so I brought Julia Rose with us. We passed a friend’s house on the way to the hospital and I saw lights on, so once Lisa got checked in I called the friends, a young married couple, and they came out to stay with Julia Rose in the waiting room.
The OB appeared and checked on Lisa, before napping in the corner of the prep room while the technicians prepared an operating room. I wondered about how ready he would be but he performed well and the babies were born. They came out the way babies should come out, pink and crying, and though they were relatively small, Jackson barely four pounds and Stella a little bigger, compared to Julia Rose they looked like giants. I left later that night to take Julia Rose home, feeling confident. We were at a small regional hospital, not a powerful university hospital with a NICU like we had experienced with Julia Rose, but I knew people had babies here every day, without complications, and we would be okay. I felt like we were due a bit of grace.
The early part of the week went well. Lisa slowly recovered, and we got to spend time with the babies, holding and feeding them. I’ll never forget the feeling of holding my three children at once, a baby in each arm and Julia Rose on my knee. We received visitors in Lisa’s room. My mom came to help with Julia Rose at the house. Our pediatrician told us that once the babies could be weaned off the NG tube and showed a little weight gain, they could go home.
On Thursday, Stella and Jackson seemed sluggish. They had little appetite and they were less interactive. The doctor and nurses suggested it was a minor setback, that they would have good days and bad days at first, until they gained some strength and really started to feed and put on weight. But I left that night with a bad feeling. On Friday, Stella and Jackson spent most of the day in the nursery and it felt wrong to be leaving them there when I checked Lisa out of the hospital. We went to the pharmacy and finished our errands automatically, and then I took Lisa home. Our tempers flared over little things, and when the phone rang, we were fighting about something stupid I’d said. The nurses at the hospital said the babies had had a downturn and they wanted us to come back.
Just looking at Stella and Jackson, bundled and sleeping hard under the warming lights of the little bed in the nursery, I could tell they were sick. They had drawn into themselves, perhaps thinking about the womb, where they had been safe and warm and there were no lights to alarm them. Jackson was worse than Stella, but they were both sick. The pediatrician told us they might have picked up a little “bug” and that he had started them on IV antibiotics. “Twenty-four hours on the antibiotics will make all the difference in the world,” he assured us. He said he thought we ought to go on home but if we wanted to stay they would let us use Lisa’s room, which hadn’t been cleaned yet.
I felt powerless; I felt the same way I imagined it would feel to be trapped in a crashing airplane, listening to the pilot’s reassuring voice, telling me everything would be okay. Lisa and I had lived in Arkansas less than a year at this point, and we felt unconnected. We went to a large church where it was difficult to make friends unless you had grown up there or had gone to the local Christian college. Our Sunday school class was large and most of the members, though our age, already had middle and high-school aged children. We didn’t network well, and so it had been a lonely year. I wanted someone to know we were in trouble, and not knowing what else to do, I called my department chair. Within an hour he had gathered eight or nine people from our department to pray with us.
One of the people who came was Dr. Sam Shultz, a gruff old pediatrician who worked at the University of Arkansas teaching hospital in Little Rock. Sam had a low opinion of the medical profession in Searcy, and he told us we needed to push to have the babies transferred to Arkansas Children’s. I couldn’t imagine putting them on a helicopter in the night. I couldn’t imagine that their condition was that serious. I wanted to trust the pediatrician, who told us that he couldn’t recommend a transport, but he would approve it if we asked.
Our group prayed for Stella and Jackson and waited with us through the evening, but sometime after 10 p.m., I suggested everyone go home. We had decided to wait out the night in Searcy and then make a decision about transport in the morning. Lisa and I camped out in her old room. She lay on the bed and I curled up in a chair, watching Rebel without a Cause with the sound muted. I couldn’t sleep. About three in the morning the nurse called and said the babies had taken another bad turn, and they’d called Angel Flight, the children’s hospital’s air ambulance, and it was in flight to pick up Stella and Jackson.
We went to the nursery and waited, but when the flight crew pulled in they asked us to wait outside. They had to stabilize the babies for the flight, which meant starting IVs and intubating them, even though they were breathing on their own. When the flight crew came out they had the babies locked away in little incubators to keep them warm on the flight. They reminded me of the sleeping pods from the movie Alien. The flight nurse gave us a minute to tell the babies goodbye, though we couldn’t touch them and had to see them with a mask fitted over their noses and mouths. She told us how to find the NICU at the hospital, and they left. Lisa and I went home and packed a bag, woke my mother and told her where we were going, and set off for Little Rock. Driving down the highway I knew the helicopter had gotten to the hospital before our bags were packed, but as the sky was lightening I couldn’t help but scan the sky for a glimpse.
￼We found the NICU and got a chance to see the babies. The staff didn’t know much at the moment, but the babies were stable and there were lots of tests to be run. We got badges to wear around our necks identifying us as Parents, officially checked the babies into the hospital, then went to the NICU waiting room and watched people slowly wake up from their chairs that converted to beds. We moved down to the cafeteria to give them some privacy.
It was a long day. Lots of waiting, lots of tests and procedures. The doctor didn’t know what was going on, but it was clear that Jackson was getting sicker and Stella, though not critical yet, probably had the same illness. I was scared, but at the same time I felt confident. We were no longer at a regional hospital with small town doctors and nurses. Being at a teaching hospital meant the doctors would find out what was wrong and find a treatment. I couldn’t imagine the alternative.
What we wouldn’t find out for a couple of days was that Jackson and Stella had contracted an entero virus, most likely in the womb, and it had taken a few days to incubate and develop symptoms. Enteros are fairly common for adults, with very mild symptoms—most of us would experience a bit of nausea and a slight fever. Lisa had probably contracted the virus herself and had never known it among the general discomforts of pregnancy. It was rare for newborns, which is one reason no one had started treating for it. Viruses cannot be diagnosed quickly. Generally, doctors take a culture and then grow the virus in the lab. It might take two or three days to identify, and then it’s easier to treat. But for newborns, there was no approved treatment for entero.
As it became clear the antibiotics were having no effect and the doctors could narrow it down to a virus, though an unknown virus, the futility of our situation slowly began to hit me. All day Saturday the virus attacked the lining of Jackson’s organs, which meant that he was “bleeding out” internally, everywhere. About all the doctors could do was pump in platelets, trying to keep his blood volume up, so his body swelled like a pumpkin, stretching his skin tight and erasing his features so that within a few hours he was no longer recognizable. One of the hardest parts of dealing with his death was this loss of features over the eight days of his life. I still can’t really remember what he looked like the day he was born. Pictures don’t help. All I remember is the way he looked when he died.
Jackson’s nurse that first day, Saturday, graduated nursing school from the university where I taught and where Lisa was enrolled in the Master’s Nursing program. We knew the names of a few of the same people. I asked about Jackson’s plan of treatment.
She answered in jargon. She told me that she had just increased the volume of platelets they were pumping in, and in another hour they could increase the volume again. At that point he would be maxed out on what they could do.
“So, what will you do then?” I asked.
The nurse just gave me this look, frustrated, helpless, a little annoyed, accompanied by body language that was not quite a shrug of the shoulders. I can imagine that she wished she could take me by the shoulders and say, “Why don’t you get it?” In her mind, she had told me what Lisa heard, but either didn’t have the heart to tell me, or couldn’t bring herself to acknowledge with words: Jackson was going to die.
Lisa and I wandered off to the NICU waiting room, fifty feet wide and a hundred feet long. There was a check-in desk, phones scattered around the four corners of the room, a set of lockers, two unisex bathrooms, and a stack of towels, blankets, sheets, and pillows. The room was ringed with massive easy chairs that folded out into sleepers. During the day families would stake out corners and sets of chairs, receive visitors, wait, drink coffee and coke, snack, watch TV, read, or stare across the room through exhausted and hopeless eyes. At night the waiting room was cleared and two family members were allowed to stay the night and try to get what sleep was possible in a room that was darkened but never dark, quiet but never really quiet, and full of snores and groans and whispered conversations despite the quiet rule.
We fixed our beds and crawled onto them. The room was settling down, but not quiet yet. Two doctors came in and found us. They had just come on shift and had done their assessments. They gave us some specifics, technical stuff, but then one of them, after a long pause, said, “We don’t expect Jackson to live through the night.”
There wasn’t any need to question him. What the nurse had been trying to tell me and what Lisa hadn’t been able to tell me became clear. I’ve never looked for miracles, and I didn’t want a false sense of hope.
“Can we stay with him tonight?” I asked.
“You can stay as much as you want, come and go as you want.” It was unit procedure to request permission of the patient’s nurse to come on the unit, but waiving that procedure only happened in the worst cases.
I thanked the doctor for being direct and he assured me he would be on the unit all night, to call him if I needed him.
Lisa and I sat on our beds. She broke down, and I moved over and put an arm around her.
“I don’t want him to be alone tonight,” I said.
It took a long time for her to respond. “I can’t be in there. I can’t watch him die, but I don’t want him to be alone either.”
“I’m going to go in there, then,” I said, “but I don’t like leaving you here alone.”
“It’s okay. I think I’ll try to sleep.”
I didn’t think anything about her not wanting to be with Jackson. Different people react to tragedy in different ways. Lisa had just had a miserable pregnancy, followed by major surgery, and a traumatic week. I wasn’t sure why I wanted to be there, or what I thought I could accomplish. But I did make a decision, and I remember thinking this very clearly, and whether it was tempered by what had happened with Hayden or not, I don’t know. I accepted Jackson’s death, but I put that away somewhere, into a box that I didn’t open for a long time afterward. I knew that my relationship with Jackson was conditioned upon that night—that we had not had time to forge any meaningful history. We would have no time to share the experiences that weave their way into our memory. I thought to myself, I’ve got a few hours here to spend with the only son I will ever know.
And so that night I drank coffee and perched on a stool beside Jackson’s warming table, leaning on his bed, gently stroking his back and legs with my index finger, avoiding the tubes that snaked away from his ankles, wrists, head, nose, and mouth. I talked to him. I told him about our family, Julia Rose and Lisa, and about the games Julia Rose liked to play; about the dogs that were waiting for him at home, Bonnie and Dexter; and about the cats, Harley and Killer, who probably wouldn’t be too thrilled by his presence. I told him about camping trips, about hiking fourteen-thousand foot peaks in Colorado, about the Denver Broncos, the Colorado Avalanche, and canoes and kayaks and rivers and lakes and the joy of being on water. I whispered Julia Rose’s favorite songs and the books I had memorized from repeated readings. I apologized to him for being born in Arkansas, and I told him he could blame that on me. I told him that when I envisioned heaven I saw my father and his older brother Hayden waiting for him somewhere, waiting for him to go fishing.
I didn’t pray that night, as prayers go. But I think my soul cried out to heaven and I believe God heard me and gave me credit. I think he blessed me that night, if it can be called a blessing, because in not giving in to despair I formed a relationship with Jackson that has made his death tolerable. Without that night, I feel that I would have never known him, even if the knowing was only based on how I envisioned our future.
All day Sunday we were inundated with visitors from our church. People, most of whom we didn’t know, were fasting on Jackson’s behalf. I tried to stay with Jackson all day, but I kept getting called out into the waiting room to pray with our elders or talk to people who had come to support us. Every few minutes the phone would ring and often someone would call out our family name, and I would go and explain what was happening, over and over again. A colleague I barely knew at the time had driven down and he wanted desperately to help. I thought for a minute. “He doesn’t have any toys,” I said. “And he’ll never have a toy while he’s alive. I’d like him to have a ball beside him.” He found one, somewhere.
I don’t mean to sound ungrateful. I was touched, but I think I went a little crazy that day, because giving myself up to being consoled and prayed over kept me from sitting beside my son. I didn’t want to go back in there and find out that he had died alone. It went on like that all day, until late afternoon when people began the drive home.
Jackson died Sunday evening around seven p.m., with Lisa holding him and me holding them, and our doctor, sitting beside us, suffering with us, I believe. I watched the monitor readouts announce his body giving up, remembering the afternoon my father died while I sat beside him. Jackson seemed to relax as he died, and I was glad that his body wouldn’t suffer anymore. Dr. Lyle verified with his stethoscope that his heart had stopped and pronounced his death. Lisa passed him to me and I held him a long time.
We went to check on Stella, a few aisles over in the NICU, still drawn within herself, still sick, but for the moment stable. Around 9:30 that evening our doctor found us.
“I know that you’ve had a hard day,” he said, “but now we have to think about Stella. She has the same disease, and we think it’s a kind of entero virus. She was stronger than Jackson at birth, so she didn’t show the symptoms as quickly as he did. But there is no doubt that she is following the same pathway, and if we can’t find a way to help her, she will follow his same course.”
While we were waiting for Jackson to die, the doctor had spent the afternoon researching on Medline. He had identified a trial drug that was being used in clinical tests for older children with entero virus. Stella was not qualified for the trial, but hospitals and drug companies have a sympathy clause built into clinical contracts that allow non-enrolled patients to use trial medications in life or death situations. Arkansas Children’s had a vial of the medication on hand, he said. It was an extra vial that had not been used on another patient, and it was scheduled to be shipped back to the drug company. The doctor had already sought and received permission to use the medicine, pending our approval.
“I can’t guarantee this will work,” he said. “It’s a trial medication, and no testing has been done on premature infants. We’ve got a little more time with Stella than we had with Jackson, but I can’t see this in any other way than God’s hand working here. It’s more than coincidence to have the only medication that might work on hand. We can start tonight.”
“There’s nothing else we can do, is there?” I asked. “This is what we’ve got?”
“We can try a couple of things,” he said. “I want to do a total volume exchange on her. That means we pull all of her blood out of one side of her body, and replace it with fresh uninfected blood from the other side. That in itself is a risky procedure, and it might not help except to slow the infection a little.”
We gave our permission, and spent the next week sitting in the NICU waiting room fighting along with Stella to get well, which she did. We don’t know what worked, whether it was the miracle medication, the total volume exchange, the prayers and fasting of righteous people, or just God looking down at us and saying, “For now, you two have had enough and I’m going to give you this little girl.”
As I write this, thinking back over the last twelve and a half years, I know I haven’t been a prayerful person. Not always, and my prayers grew fewer and fewer as trials mounted: My father’s death due to a very brief bout with cancer, my father-in-law’s lingering death in a hospice bed, my brother’s alcoholism and subsequent decay, my mother’s depression and loneliness, job disappointments, years of infertility treatments and the financial burdens that go along with infertility, three rounds of in vitro fertilization that resulted in two pregnancies and four fetuses and two surviving children, and leaving Colorado.
I was never angry with God, though, and while I don’t talk to him in the traditional fashion, I talk. In essence, my life became a prayer that night with Jackson, our bonding was a prayer, and the effect of suffering made me a better person. The helicopter flight deck, located directly above the waiting room, vibrated way too frequently with new arrivals, and I see that as my prayer.
I think about Jackson a lot. For some reason, I think about him every time I mow my grass, even now. I open the box of my children’s deaths as I ride my mower in concentric circles that grow smaller and smaller until I disappear down the center. And I see that as prayer. I sing the song “Blessed be the Name of the Lord,” and I understand the verse that goes, “You give and take away; You give and take away; my heart will surely say, Lord blessed be Your name” as my prayer. I had a night with my son. I’m blessed.
About the Author – Terry Engel
Terry Engel studied creative writing at the Center for Writers at the University of Southern Mississippi. His work has appeared in Cream City Review, Open City, Buffalo Spree, Sixfold, Georgetown Review, Cave Region Review, and Mississippi Review, as well as winning the Transatlantic Review Award and honorable mention in Pushcart Prize. He teaches writing and literature at Harding University in Arkansas, where he lives with his wife and two daughters.
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