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Preemie

Preemie

– Non-Fiction, “Preemie,” by Terry Engel – 

Preemie

My daughter, now eighteen, is vibrant and healthy. Julia Rose has wild curly blonde hair that frames her face like a lion’s mane. She has the long, thin, strong body of a dancer, and she is applying for some of the best college ballet programs in the country. She is a voracious reader and she challenges herself in everything from advanced placement courses to climbing fourteen thousand foot mountains. She loves to travel, go to museums and art exhibits, and walk in the woods. Soon, she will be beyond my sphere of influence and control, and I’m okay with that. But when I look at her, as complete and wonderful as she is, it is hard not to see that she is half of a whole. It’s hard not to think about what is missing.

***

The ultrasound screening room was dark. Lisa was on the table with her belly exposed and covered in ultrasound jell. The technician was chatty and the atmosphere was light. I watched the progress on a 25 inch TV mounted on the wall. The technician had found Baby A, and was taking measurements. An image of a tiny alien would swim out of the snow and freeze, then there would be a click and a white line would appear at one end of the image and another click and another line and new data would be ready to enter into her growth chart. Seeing an unborn child swimming in the inky amniotic fluid of an ultra sound screen is something hard to describe. For me, I think, it’s the moment that my children became real people; tiny human beings, rather than the abstract concept of a future child. Everything looked good so far.

Then the technician looked for Baby B, Hayden, and her mood changed. The images swam and focused and blurred. She moved the wand over Lisa’s abdomen trying new angles. Then the technician put down her wand and abruptly left the room.

“This is bad,” Lisa said.

I couldn’t read her expression in the dark room, and for that I was glad. Lisa was a labor and delivery nurse and knew enough about ultrasound that I trusted her worry. I couldn’t think of anything to say, but I didn’t have to. A doctor came in and introduced himself, told us the technician had seen something she wasn’t sure about and wanted him to take a look. He started the examination again, and once again the images swam in and out of focus. No one talked. After a while of looking, maybe five minutes, the doctor set the wand down gently and used a tissue to wipe the goop off of Lisa’s abdomen. He pulled the sheet up to cover her, sat on a stool, and looked at us.

“I’m not going to sugarcoat this,” he said. “Baby B has stopped growing. There’s been no growth since the last measurements, and I’m reasonably sure it’s no longer viable. There’s a problem with the placenta, the way the cord is attached. I’m worried about Baby A.”

Once he had powered through the bad news, the doctor relaxed and his tone became sympathetic. He gave us some hope about the surviving baby—Julia Rose, as it turned out. But we left the office scared and deflated. We could hardly speak to one another. There was nothing to be said.

We called a friend from church and asked her to spread the news. People had been praying for our pregnancy for years, dating back to the infertility treatments that had led up to it, but we weren’t in the mood to talk about it, or even to respond to sympathy. We got in the car and drove up into the mountains, to Glenwood Springs, a little town on the Colorado River bounded by red rock bluffs. We checked into Red Mountain Inn and just sort of sat there, and then to change the scenery we drove over other mountains to Steamboat Springs and another hotel. I remember driving through an ancient volcanic landscape, cone shaped green hills dotted with the occasional sheep-herder’s wagon—sheet metal tents on truck tires, stovepipes sticking out of the roof—and yearning for a simpler life without problems. I held Lisa’s hand and we didn’t talk much.

I know I didn’t feel the loss in the same way as she. Hayden had been an image on a screen, a future tense that I could imagine but not know, an abstraction, not something that had lived inside of me. At that point we didn’t even know the sex of either baby—we had picked out and ranked two girl names and two boy names. When I imagined my life as a father, the images were always of hiking and camping, kayaking on whitewater rivers, running with dogs, walking along beaches, and reading books. Gender didn’t matter. I imagined that my life would go on much as before: writing in the mornings with my children peacefully asleep in their cribs as I worked, much like my dogs curled at my feet, asleep until it was time to go for a walk. But Lisa felt the loss bitterly, and all I could really do was hold her hand. Promises that things would be all right were foolish at this point, because I didn’t really hold out much hope. We tiptoed toward the hoped-for delivery, counting weeks. Our OB told us that if we could just get to thirty-two weeks the survival rates for preterm babies boomed. At twenty-nine weeks Lisa got a steroid injection to help the baby’s lungs develop, and then she went on bed rest.

One day, when Lisa was lying in the bedroom listening to Julia Rose’s heartbeat with a fetal heart monitor, the baby’s heartbeat decelerated sharply three times within a few minutes. Lisa yelled at me that it was time to go. We drove to the hospital where they checked her in immediately and hooked her to another monitor. After an hour our doctor came in, read the strip, and asked, “Are you ready to have a baby today?”

Things moved fast. We had known the delivery was going to be an operation from early on, but I hadn’t really prepared myself in any way. I hadn’t even thought to grab the camera on the way out the door, so I went down the hall and found a machine that sold disposable cameras, the choices: It’s a Boy! or It’s a Girl! I chose the girl option, put on a sterile gowned and mask, and watched them start Lisa’s epidural. When she was ready I walked beside her into the operating room.

During the operation I stood at Lisa’s head and held her hand. A screen had been set below her chin so she couldn’t see what was happening to her.

A ways into the operation she asked, “Am I breaking your hand?”

There was hardly any pressure at all and I told her.

“It feels like I’m squeezing your hand so tight it would hurt.”

I peered past the screen and watched the doctor at work. She had quick hands and seemed completely at ease there, blood soaking her to the elbows. Someone at the operating table said, “You can look away if you want, especially if you feel yourself getting faint.”

“I’m fine,” I said.

“What does it look like?” Lisa asked.

It was a bloody awful mess, and all I could think of was skinning a deer, though that didn’t really come close. I told her, which got a laugh from the operating room crew. Lisa was relaxed enough to let it pass.

When they delivered Julia Rose, she looked more like a gangly, bloody and bruised spider monkey than a baby. There was a moment when I was allowed to feel like a normal father. I got to cut the cord and then they wrapped her in a receiving blanket and pulled a tiny knit cap over her head to hold in the warmth. I held my daughter, just long enough to take a picture and hold her close to Lisa so she could see. Then the Neonatal Intensive Care Unit (NICU) crew that had gowned up for the operation sprang into action. They put her into a portable warming unit, basically a sleeping pad on wheels with monitors and a warming light overhead, and wheeled her into the NICU for an assessment. (I didn’t realize, until later, that they had been prepared to resuscitate and intubate her had she not been breathing.)

The nurses hustled me down the hall. “Go with your baby for now,” they said. “You can come back and check on your wife in recovery.” It was only later that I remembered they had one more delivery to perform, what was left of Hayden’s 22 week old body.

In the NICU Julia Rose was doing well, amazingly well for 29 and ½ weeks gestation. She weighed two pounds, nine ounces, but she could breathe on her own, which was the thing that mattered most on that day in her life. She wrinkled her tiny face and cried silently, not really big enough or well developed enough to make much sound, but she resented being handled and the NICU nurses dubbed her “the drama queen.” Things looked good, the doctors and nurses assured me, much better than they had expected going in to the operation, and much better than most 29 week babies could expect. They didn’t tell me a lot, I realize now when I think about it, but they told me what I needed to know.

I spent the rest of the afternoon going back and forth between Lisa and the NICU, reporting what I could to Lisa. I didn’t know enough to answer her questions, but she was in enough pain not to ask too many. In the recovery room the nurse slowly prepared us to see Hayden, to hold him, for the first and only time. The nurse’s name was Alex, and she was the unit’s grief counselor. She knew she only had a short time with us, and she didn’t waste it being gentle. She had lost two children of her own, she said, and she talked about ways of coping with the loss. Most of it I didn’t hear, and I only know what she said now because I met her again several times, and she called and wrote us for several months, until we changed jobs and left Denver.

I stayed with Lisa until late that night, and then finally I went home to let the dogs out and make phone calls. I sat in the back yard with my dogs about me, wrung out from not being able to answer all the questions: Was Julia Rose going to be okay? When would she come home? How was Lisa doing? How was she holding up? “I don’t know,” I said, over and over that night. The only thing I did know, sitting in my back yard grass with my dogs piled around me, was that I was a father now, but I had never felt so lonely in my life.

Over the next six weeks, I slowly came to grips with two things. One, I had come very close to losing both of my children, and two, no matter how bad things looked for us, there were so many children in that unit who had it so much worse than Julia Rose that I could only count myself blessed beyond imagination. There were children there who didn’t survive, and others who’d already undergone the first of many complicated surgeries and procedures. Over the years, as a result of the stories presented through the Preemie Discussion Board that Lisa belonged to, we would hear about recurring hospital stays and operations and procedures, unending suffering for both children and parents, and we would also hear of marriages ending due to the strains that caring for a chronically ill and developmentally disabled child put on relationships.

During those first six and a half weeks, Lisa and I immersed ourselves in Preemie culture, living for the two hours a day—seven a.m. in the morning and seven p.m. in the evening—that we were encouraged to spend time with our baby. The other twenty-two hours a day Julia Rose was kept warm and quiet and in the dark, trying to make up for the time lost in the womb. I learned to change diapers with my arms pinned under the lid of an isolette, the incubator where she lived, and we waited for the 7 p.m. weighing every day like we had bet a million dollars at Las Vegas. We celebrated grams of weight gained and cried over grams lost and calculated the days until she reached the magic going-home weight of four pounds. Our home was full—Lisa’s mother came for two weeks to “help with the baby” that wasn’t there, and as soon as she left my mom came for two more. When we weren’t at work, we just sort of sat around, sanding down our last nerve, waiting for the time to go to the hospital in the evenings, where we got to change her diaper (and once she got a bit larger, her outfit), take her temperature, and sit helplessly, holding her while she struggled to suck down sixty milliliters of formula, hoping she wouldn’t spit it back up and waste the calories she burned in consumption. Then, we trudged back out to the Blazer and drove home. We tried to put a good spin on minor advances, but more often rode in overwhelmed silence.

It got better. Julia Rose got better. As she slowly gained weight we got to check off milestones: The first bath; swaddling her in blankets and holding her while we read stories and talked to her; observing the physical therapist perform her exercises, and then learning the treatments ourselves, so that we could perform the exercises at home.

After six and a half weeks, Julia Rose came home, and just like most new parents, I wondered, what do I do now? The enormous responsibility of caring for such a tiny life overwhelmed me, but we managed, as most parents do, making mistakes and questioning every decision. One day I drove to the funeral home that had performed the cremation of Hayden’s body. We had decided against a burial, since, not knowing the future, neither Lisa nor I could imagine leaving a child’s grave behind. I received the ashes in a snack-sized plastic bag closed with a twist tie, along with a hollow, heart-shaped locket so that some of the ashes could be worn around the neck. The moment felt like it should have been bigger, and the presentation of the remains conducted through ceremony. But what we were beginning to learn is that most people are uncomfortable acknowledging the death of an unborn child, instead focusing on the one that survived. And once you move beyond the small circle of people who actually know your birth history and your loss, the unborn child may as well have never existed. And the pain does subside, but it never quite goes away. For years, on Julia Rose’s birthday, we released a single blue balloon into the sky and watched it float away until it disappeared from sight. And when I look at Julia Rose, I know what is missing, since I can fill the void of Hayden’s life with all the moments that I’ve shared with Julia Rose. The usual milestones, like learning to ride a bicycle and drive a car, and the special moments, like summiting a fourteen thousand foot mountain after a six-day raft trip through the upper half of the Grand Canyon. As much joy as I got from all of those moments with her, it hurts to think that it was only half of what could have been.


Terry EngelAbout 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.


Did you like this non-fiction piece, “Preemie,” by Terry Engel? Then checkout his other story, “Prayer,” available on Dreamers. Or, you might also like:  

Bachelor Party
For David
The Red Jeep
No Pain, No Gain
Gelato and Frost
Recipe for Saying Goodbye

To check out all the non-fiction, like “Preemie,” available on Dreamers, visit our non-fiction section!