Home for Christmas

Reprinted from: Dufault, Beth Leavenworth. “Home for Christmas.” Journal of Customer Behaviour 18, no. 4 (2019): 263-272.

Home for Christmas

Key words: Patient experience; Consumer-centric health care; Patient- and Family-centered care; Hospital servicescape; Servicescape co-creation; Health care marketing

Jason, look! My baby bump is finally bigger than my baby boobs!” Jennifer twirled as she came out of the dressing room. The striped yellow-and-white top hugged her curves over her dark-wash under-belly jeans. She stopped twirling and looked in the mirror. She stood swayback and pushed out her belly as far as she could.

Jason laughed. “That is a great top, Jenn. You look like summer.”

For Jason, that was the highest compliment. The first two weeks of December had been bleak so far—not bitterly cold, just grey and monotonous. But today was a good day. They bought the outfit and Jennifer wore it out of the store. They dropped off cookies for the staff at the fertility clinic, stopped for Taco Bell, and then went home to decorate the tree. Jason didn’t celebrate Christmas, but Jennifer loved it. She talked him into putting up a tree earlier every year.

Later that evening, Jason pulled up to the hospital, and followed the signs to the Emergency Room. He parked under a no parking sign, next to an ambulance. Jennifer opened the Volvo door.

“This is so stupid, Jason.”

“Stop it, Jenn. It’s not stupid to be cautious. Should I leave the car here and take you in?”

“No, I bet they really do tow cars here. Park in the structure. I’ll be fine.”

Jason looked at her dubiously. “If it IS the Taco Bell, then they should put warning signs on their burritos,” he said with mock-seriousness.

Jennifer started to give him a smile, then winced and held her stomach. She shut the car door and walked quickly toward the sliding glass doors.

Jason finally found a spot on the 5^th floor of the parking labyrinth. As he got his jacket out of the back seat, he made a mental note to figure out how to install the car seat. He’d been procrastinating, telling himself that the end of January was a long way off.

Inside the hospital, he wrinkled his nose at the antiseptic smell, and paused, disoriented. The clerk behind the ER desk was talking slowly and loudly to an ancient, crooked woman with a walker. “DO YOU HAVE AN ID CARD?” A man behind the old woman was waiting his turn patiently, holding a small blue Igloo ice chest. Blood was oozing from white gauze that was wrapped around his hand. Jason started to feel woozy. A volunteer asked Jason what he was there for.

“My wife—she’s pregnant…”

“Was she wearing a yellow top?”

The volunteer gave Jason directions to Labor and Delivery. “Follow this hallway through the ER, then take a left at the gift shop. Go down that hall until you get to the silver elevators. Take one of those to the 3^rd floor, walk straight until you see the nurse’s station, and let them know you’re here.”

Jason made a wrong turn, took the wrong elevators, and ended up in Oncology. There, a custodian took pity on him and walked him to the Labor and Delivery nurse’s station. A solitary woman sat writing. Jason cleared his throat and she raised her head. Jason gave his name and Jennifer’s, the woman tapped a computer screen, waved her hand at an open door, and went back to writing.

Jennifer sat on an exam bed, in a hospital gown. Her top and jeans were folded neatly on the chair next to her.

 “How long?” Jennifer was asking the doctor, who had his back to her as he was typing into the computer in the corner.

The doctor swiveled his chair around to answer. “Let’s take this one day at a time.” He saw Jason in the doorway, and nodded acknowledgement. He turned back to talk to Jennifer. “I’m going to start you on some medicine to slow the contractions.”

“Wait. Contractions?” Jason felt dread drop in like a heavy stone.

“One day at a time,” the doctor repeated.

The vagueness dismayed Jason. He liked precision.

A nurse told Jason that since Jennifer was being admitted, he needed to go to registration.

“Now?”

“It’s standard procedure. You’ll be done quickly.”

“Where is it?”

“Next to the ER on the first floor.”

Jason retraced his route to the Emergency Room—a little more competently this time—and found the admissions office. He filled out the pages of hard copy forms, but he had to search through his phone for a full five minutes to find Jennifer’s ID number and her work address.

The clerk waited patiently until Jason had finished.

“Sir, how would you like to take care of the deposit? We can put your Mastercard, Visa, or American Express on file, or if you’d like to use a personal check…”

Jason realized he’d left his wallet in the car. He looked at the clerk miserably.

“I’ll make a note in the file, and you can take care of this later.”

Jason got back to the room just in time to see Jennifer’s face tense. The the craggy white lines on the monitor next to her rose like a seismograph recording a small earthquake. She stroked her belly and pressed her lips together, holding her breath as the tremor peaked.

A nurse entered carrying plastic bags of IV solution. She scanned each bag before she hooked them up to Jennifer. “Like groceries in the check-out line…” Jason thought. He wondered if each scanner beep translated into lines on a bill.

When she could relax again, Jennifer leaned back and looked around the sterile white room. She and Jason had been here on a tour this week, for the first day of their “What to Expect When You’re Expecting” parenting class. Her mind wandered to the nursery back home. Tiny diapers, a beautiful lacquered off-white crib, a mobile with black, red, and white decorations to encourage mental stimulation… Check, check, check…she ticked them off as completed tasks on her nesting to-do list. She moved on to consider the things that she still needed to do. So much.

Suddenly, she leaned forward and grabbed her abdomen with both hands.

“Fuck!”

 Jason was stunned. Jennifer never swore. The seismograph recorded a much stronger quake.

“I think you need to breathe, Jenn…” Jason wasn’t actually sure. They hadn’t gotten to this part of their parenting class yet.

The green LED numbers on the monitor over Jennifer’s bed dropped precipitously. Jennifer closed her eyes and looked like she was drifting off to sleep. Alarms started a deep-toned insistent bell-ringing.

The doctor jumped up. “Jennifer! Let’s get some oxygen on you…” He ordered Jason out, but Jason stood frozen in place. The doctor worked with the oxygen mask with one hand and pushed a big blue button on the wall with the other.  A nurse came in. looked from Jennifer, to the fetal heart rate monitor, and then back to Jennifer again. She ran to the door and yelled down the hall.

“Crash C-section! Call a team!”

Medical staff exploded into the room. The nurse ushered Jason out. Through the still-open doorway, Jason saw a sea of blue-gowned people working on Jennifer. Someone was draping blue towels on her, and someone else was splashing rust-colored solution on her bare, protruding belly. They were getting out huge syringes from some big red carts that looked like tool chests, and ripping open blue and white packages with tubes and metal instruments Jason didn’t recognize. Jason’s head felt light, and an encroaching grey fog blurred the edges of his vision. His knees went weak, and he squatted on the floor. He made a note that there was no place to throw up but the linoleum floor. A nurse closed the door.

As Jennifer came out of her emergency anesthesia, she sensed surgeons and nurses tending her. Jason was there, too, staring across the room. She followed his gaze and could see another set of nurses and doctors working on a tiny grey baby under bright lights. The images of the nurses and the doctors, the red crash carts, the hospital equipment, the alarm sounds—all melded and blurred together like surreal scenes from Grey’s Anatomy. After what felt like forever, the baby grimaced, took on color like a pink salamander, and started waving her tiny limbs.

“What’s her name?” called one of the nurses.

“Kylie.” answered Jennifer firmly.

A transport team arrived and began preparing Kylie to be moved to the more advanced NICU at a neighboring hospital. They pushed an equipment-laden transport isolette into the room. It looked like a heavy-duty yellow metal box on wheels, covered in gauges, with small plastic windows on the side and oxygen tanks underneath.

“Go with the baby!” Jennifer commanded.   

“I’m staying with you.” Jason had no intention of moving.

“You have to go with the baby because I can’t.”

“There’s nothing I can do there. And you’re going to need me…”

Jennifer started trying to pull the tape off of her arm to take out her IV. Jason had lost this argument. He grabbed Jennifer’s  hand, kissed it, and gently placed it by her side. He nodded his head to tell her he’d go.

An ambulance waited. The brightly-lit interior looked like the bridge of a spaceship. At any other time, the engineer in Jason would have been fascinated with all the high-tech equipment, but right now he was trying to figure out where he would sit to accompany Kylie.

“Dad!” the driver got Jason’s attention. “You’re going to have to follow in your car. It’ll be crowded in there.”

Jason took the elevator to the fourth floor of the parking structure, remembered it was the fifth, and ran up the stairs. He was surprised and relieved that the ambulance was still in the emergency bay when he got back. When the team had secured the yellow box into position, the driver closed the back doors of the ambulance with a clang, then drove away slowly. Jason followed its red flashing lights into the dark December night.

The next hours were a blur. At the NICU entrance, the team wheeled Kylie through the doors, and someone sent Jason downstairs to admissions to answer questions and fill out more registration paperwork. He knew he’d be letting Jenn down by being stuck in an office instead of being with Kylie.

“Do I really have to fill all of this out again?” he asked the registration clerk. “I gave exactly the same information to the last hospital.”

“Yes, sir, we need it in this system. We’re in a different network than they are.”

Jason sighed resignedly and filled out information as fast as he could. Paperwork finished, the clerk gave Jason a sheaf of papers. On top was a glossy pamphlet with the words “Your Opinion Matters! Let Us Know How We’re Doing!” in bright letters. Jason looked back at the clerk with raised eyebrows.

“We have to give them to everyone. It’s a ‘new initiative’ or something.”

Jason headed back to the maze of hallways and elevators. When he got back to the NICU, it looked off-limits, with signs warning about everything, and no one readily apparent to ask about entry. He found a waiting room, and slumped into a chair. The nurse from the transport team who had talked to him at the other hospital walked past the waiting room. She noticed Jason, and stopped.

“Why aren’t you with Kylie?”

“Uh…”

“I’m Nancy, your baby’s nurse. Come with me.”

Nancy led Jason back to the NICU doors. She showed how to press an intercom button to ask to be admitted. It was answered by a woman from the inside of the unit. Nancy looked at Jason expectantly, and he stammered into the speaker, “Uh, uh…” 

Nancy broke in. “Hi, Pam, it’s dad for the new transport in Room 4.”

A buzzer sounded and the doors swung open. Nancy showed Jason a big sink, how to turn on the water with the foot pedals, and how to open up a soap packet and scrub his hands. She showed him the blue elastic-banded paper covers that he put on awkwardly over his shoes, and the thin yellow hospital gowns to put over his clothes. Then she took him to see Kylie.

“Say hi to your daughter…” whispered Nancy. Kylie lay enclosed in a clear plastic box. She had electrodes and wires running from her chest. A tiny breathing tube about the size of a juice box straw went down her throat. It was attached to ropes of corrugated blue tubes, and they were connected to more machinery. The alarms from the bedside equipment in the room started squawking in confusing cacophony, but Nancy didn’t look concerned. She reached up to the monitors to silence the alarms, and fiddled with the wires and tubing.  

“My daughter…” thought Jason. “My daughter.”

Over the next days, every time Jason went back to see Jennifer as she recovered, she asked him why he wasn’t with Kylie. He didn’t say it was because he always felt in the way. He also didn’t admit that he was desperately lonely and afraid.

The empty, silent house was no better. The stark loneliness made him ache. He had to pass the half-decorated Christmas tree every time he came home to shower, change, and grab a couple hours’ sleep. He had grown to loathe the tree and tried not to look at it, but on Day Four, he noticed that under the side that actually had lights, next to a box of ornaments waiting to be hung, there were three decorated stockings. Each one was embroidered with a name—Jason, Jennifer, and Kylie. When had Jennifer gotten them? She must have put them under the tree while they were decorating it. He picked up the littlest one and put it in his pocket.

Finally, the doctor told Jennifer she could be released. A volunteer transported her in a wheelchair to the lobby where Jason was waiting. He had imagined this moment many times, but in his mind, balloons and flowers and a swaddled baby had accompanied Jennifer in the wheelchair. Instead, she cradled a mechanical breast pump on her lap.

At the NICU, Jason hid his insecurities and demonstrated for Jennifer how to ring the bell, how to scrub, and how to put on the shoe covers and gown. Jennifer was obviously irritated that he knew more about all this than she did. Jason was hurt, but he understood. As they walked  through the unit, Jason kept a slow pace for Jennifer. They glanced at other babies as they walked.

“I don’t feel like a mom, Jason,” Jennifer whispered to him. “I don’t even know what my own baby looks like.”

“It’ll be OK, Jenn. I promise.” Jason hoped the promise held.

They entered their room, and Jennifer saw the little red velvet stocking with “Kylie” embroidered on it hanging on the outside of an isolette. She looked at Jason. 

 “I wanted your love to be here when you couldn’t be…” Jason had also decorated the IV pole behind the bed with little Christmas lights. He looked at Jennifer anxiously. Jennifer’s eyes brimmed with tears as she sat in the rocking chair next to the isolette, and tentatively placed her hands against the warm plastic. She started to cry.

“She looks like a cyborg, Jason.”

“I know, Jenn. I know. They say she’s doing well, though.”

Nancy came in, introduced herself to Jennifer, and asked if she wanted to hold Kylie. Jennifer was hesitant, but Nancy went on, “Skin to skin contact is the best medicine.”

Nancy made reassuring sounds as she got Jennifer settled into to a big recliner. Another nurse came in to help manage all the tubes and wires as Nancy lifted Kylie from the isolette.

“Open your top, Mama,” said Nancy.

Jennifer did as she was told. Jason was surprised, but Jennifer had stripped off her modesty like her clothes at the other hospital. Nancy laid Kylie between Jennifer’s naked breasts. Jennifer felt the bliss of connection. Maternal feelings hit like a tidal wave. Her nipples tingled and warm milk flowed. A small rivulet of thin blue-white fluid trickled down and pooled under Kylie’s body. Kylie squirmed and the alarms went nuts.

Eventually, Kylie found a comfortable position on Jennifer, and the alarms retreated into silence. Within minutes, mom and baby were dozing. Nancy covered both with a flannel baby blanket. Jason watched Jennifer and Kylie with a mixture of love and relief. But the monitors kept drawing his attention as the duo slept.

The next day Jennifer wasn’t quite as overwhelmed, although she was in more pain from the exertion the day before. In the room, she sat in the rocking chair next to Kylie’s bed, and focused on details to distract herself. Kylie was in a double room, and there was a half-size crib on the other side. A mobile with sailboats was hung above the crib, and colorful toys lined the window ledge. In a rocking chair next to the crib, a baby was lying on his sleeping mother’s chest. He had much less tubing and equipment than Kylie, and was dressed in a green elf onesie. He was also wearing an elf hat. Jennifer stifled a giggle, because the baby had the visage of a wizened old man and really did look like an elf. She wondered if his mom was aware of the total effect.

“That’s Sarah and Pete.” Jason said when he saw her watching them. “They’ve been here a long time.”

At her name, Sarah’s eyes opened. “Hey, roomie.” Sarah said to Jennifer. “Welcome to the NICU Mom’s Club. This little elf is Pete.”

A group of doctors and nurses with clipboards and a rolling computer cart knocked at the doorway and came in without waiting for an answer.

“Hello, mom!” The doctor who was evidently in charge nodded to Jennifer. “Hello, Sarah!”

He pointed at Kylie and addressed the clipboard group. “This one’s a 27-weeker”—pointing to Kylie—“admitted 5 days ago. Vent settings 24/4, rate of 12, O2 34%”–looking at the computer screen–“but labs are clear and ABGs are trending up.”  

The words washed over Jennifer with little meaning. “Want to tell us anything?” the doctor asked Jennifer directly.

 Jennifer had questions that would fill a firehose, but couldn’t form any of them coherently.

“Your little princess is doing great right now. She’ll have to grow and learn to breathe on her own, but you both keep up the good work.”

The group moved across the room to Sarah and Pete and drew the curtain between the two beds. The talk on the other side of the curtain sounded much more serious in tone. As the medical staff left the room, a nurse opened the curtain. Sarah looked crestfallen.

Sarah saw Jennifer’s worried look and said, “I hoped Pete was doing better. But his bleed is getting worse.”

“His bleed?”

“Yeah, he’s got an intraventricular hemorrhage in his brain. IVH. Now we have to wait and see. And he’s having more A’s and B’s.”

Jennifer stared at her.

“Apnea and Bradys. Bradycardia.”

Jennifer was still blank.

“Apnea is when the baby stops breathing. Bradys are when the heart rate falls too low.” Sarah smiled gently at Jennifer. “That’s NICU 101! Don’t worry, you’ll learn. You’ll have to.”

“Why?”

“It’s the only way to fit in and to be able to stay at the bedside. Be a help. Understand their language. Speak it. The NICU is like a foreign country, and it’s better after you acclimate.”

“Are you a nurse?” asked Jennifer, awestruck and intimidated by Sarah’s expertise.

“Heck no!” answered Sarah. I’m an administrative assistant who’s been here a long time.” She made a pensive face. “I mean, I’m an administrative assistant if I still have a job by the time we get out of here.”

Jennifer and Jason developed a routine as the days went by. They decided Jason didn’t need to take any more time off work. It wasn’t because Sarah’s comment had made them worry, really, although Jason did have some big projects going on, and a difficult boss. But Jennifer had taken to the medical environment surprisingly quickly, so they gradually adopted a “divide and conquer” mindset, with Jennifer doing most of the in-person baby care, and Jason doing things at home. Jason dropped Jennifer off early in the mornings on his way to work, then picked her up around 7pm. Take-out aromas usually filled the car, and that’s when Jennifer would realize she was starving. She didn’t like to leave Kylie’s bedside when she was there, and food wasn’t allowed in the unit. Arriving home, they ate on the couch and watched Netflix until one of them fell asleep. Shower, rinse, repeat.

On the weekends, Jason took “NICU duty” as he called it. At home, Sarah caught up on her sleep, went online to read the NICU mom blogs, and usually came back early. The NICU had started to feel like a safe cocoon to her. She knew the rhythms, and she was ensconced within them. She felt at peace holding Kylie in the recliner.

Jennifer became good friends with Sarah over the coming weeks, and somewhat surprisingly, Jason became very attached to Pete. Pete had been born a 24-week preemie, weighing less than a pound. Now, at six months, he was a wiry little guy. He was old enough to have a ready smile and sparkling, communicative eyes, and he used both to great effect in his old-man face. He couldn’t make any noise because of the breathing tube in his throat, but he made up for that with his expressive face and body. He was the unit favorite, and if Sarah had to step out, there was often another nurse in the rocking chair by his bed, reading to him, holding him, or cooing to make him smile.

When Jason was on “NICU duty” or visiting with Jennifer, he took every opportunity to interact with Pete. Sarah started asking Jason to “babysit” when she left the NICU to take a break or do errands. Much to Jennifer’s amusement, Jason talked to Pete about things that were near and dear to his heart.

“So, Pete,” said Jason one Saturday, as Pete smiled at Jason with his whole body, wriggling in happiness at the interaction, “Let’s talk about Star Wars. How do you think the Millennium Falcon made the Kessell Run in under 12 parsecs?” Pete smiled bigger, and reached up for Jason to hold him.

Jennifer laughed. “I hope Kylie is a sci-fi nerd for you, Jason. I really do.”

Kylie got better and better. The biggest landmark of recovery came when she could breathe on her own and didn’t need the ventilator anymore. Eventually she didn’t even need oxygen. Finally, the IV tubing was gone, with a little IV port in her hand in case she needed medicine in the future. As Kylie got better, Nancy taught Jennifer and Jason more and more NICU parenting skills—how to change Kylie’s diapers of course, but also how to disconnect the electrodes to bathe her, how to weigh her, how to record her feedings. Jason eventually got very involved in keeping track of the numbers, because he did it well. He always felt like he had 10 thumbs doing the actual baby care, but Jennifer was a pro. The day came when Jennifer could pick up Kylie on her own without asking Nancy’s permission.

The joy was tempered, though. Pete’s journey was not going well. Every day he had more equipment and tubes and wires. He became very sensitive to being moved. It was harder to get him settled when Sarah tried to hold him. Pete started having small seizures, and the alarms became a more frequent soundtrack. After each episode, there seemed to be less of “Pete” behind his little-old-man eyes. Sarah became more distant, and closed in on herself like a sea anemone that had been poked with a stick. Jennifer felt guilty about Kylie’s progress in comparison, and tried to tone down her joy at each milestone of recovery. When Pete was awake, he still made eye contact with Jason and lit up—although his candle was dimming.

One afternoon as Jennifer came back into the NICU from the new hospital coffee shop, she heard Nancy’s voice on the unit’s overhead paging system: “Code blue, Room 4.” She saw nurses and doctors run toward Kylie’s room. Her body shocked with a rush of adrenaline—and she cursed herself for taking the time to wait for a latte. Nancy raced out of the room to grab a red crash cart, saw Jennifer, and met her terrified eyes. Nancy stopped long enough to tell Jennifer, “It’s NOT Kylie. Go wait in the waiting room.” A half-hour later, Jennifer was allowed back in. Sarah was rocking and crying, and Pete lay pale and still in the crib. Jennifer thought that Pete looked very small, and somehow different. When Jason saw him that weekend, he told Jennifer that he thought Pete’s smile had leaked out and drained away.

Christmas Eve morning, Jennifer and Jason arrived at the hospital a little later than usual, because Jason had insisted on stopping at the toy store. He’d gotten Pete a Star Wars R2D2 toy that lit up, beeped, and chattered. Jennifer was skeptical, but Jason said it would make Pete smile.

The unit was quiet and felt somber. Jennifer and Jason stopped in the doorway of their room, confused.  The crib on the other side of the room was gone, and the windowsill full of toys was empty. Jennifer and Jason stared at the emptiness. Had Pete been transferred to another room? Why? Nancy came in, with a pale face and red-rimmed eyes. She shook her head, tried to talk, choked up, and turned her head. She wiped off the tears that started running down her cheeks. She excused herself, and disappeared into the nurse’s lounge. Jason looked at the R2D2 in his hands, and all he could think was that he didn’t get to tell Pete good-bye. He didn’t realize he was crying until Jennifer led him to the rocking chair to sit.

Sarah and Pete remained a story without an ending. The head neonatologist came in, but didn’t talk about Pete. Privacy. It felt to Jason like a hole in a wall where a Molly-bolt had been ripped out of the plaster. No way to patch it. The doctor had different news, though. Kylie was ready to go home.  

Late that afternoon, Nancy disconnected all the leads and wires from Kylie, and turned off the monitors. “You’re free, little girl!”

Jason felt very strange holding Kylie without the information the monitors had given him.

“How do I know what’s going on ‘under the hood’?” he asked Nancy.

Nancy laughed and said that he’d figure it out. Jason was dubious. The numbers had given him a surprising level of comfort—like a technological security blanket.

Jennifer dressed Kylie with great care. She put her in a pink velour onesie, and wrapped her in a soft cream blanket lined with satin. Jason watched Kylie intently, trying to figure out what the monitors would be saying if they were still on.

Kylie made eye contact with him. Had she flashed a smile? He thought he’d imagined it, but then she did it again.

“She knows she’s going home, dad.” said Nancy.

In the lobby, Jennifer and Jason reached the entryway. Jason held Kylie in a car seat. The glass doors slid open. They felt the fresh air, and squinted out at the cold December sunlight.

 “I’m scared, Jason.”

“I’m scared, too, Jenn.”

“We’ll be OK, right? We can do this?”

“We can do this.”

At the car, Jennifer wanted to sit in the back seat with Kylie, and Jason didn’t object. He looked at Jennifer in the rearview mirror before starting the car. “Did I tell you they sell sleep apnea monitors online, Jenn?”

“All I want for Christmas is an apnea monitor…” Jennifer teased. She didn’t tell Jason about the Christmas present she’d already ordered for him—the moms on her forum had been talking about new onesies outfits that had cute little plastic turtles on them that also monitored for apnea. She noticed a stack of papers on the seat next to Kylie.

“Let Us Know How We’re Doing?” Jennifer asked.

“What?”

“The papers back here.”

 “Oh yeah. I got that the first night in the NICU with the registration papers.”

Jennifer and Jason made eye contact in the mirror again.

“Wow. Where would we even start?”

“Personally, I’d like to start with the avalanche of mail from both hospitals, doctor specialties I never heard of, various insurance companies, the ambulance company…There are bills that are so long and so confusing that they make me want to re-program all of their computers myself.”

Jennifer held his gaze in the rearview mirror. “Ha!” she chuckled ruefully. I was thinking of all the times I felt like an idiot IN the hospital. Now I get to feel like an idiot at home dealing with the hospital, too.”

He turned around and grinned at her.

“I forgot to tell you I’d been saving that stack for us to go through together…Won’t that be a great date night?”

They broke into laughter. It felt good to laugh again.

“Isn’t your friend David working with hospitals to make them more customer-friendly or something like that?” Jennifer asked. “He was talking to us about patient and family experience.”

“You’re right. I never made the connection.”

“Well, they’ve certainly got their work cut out for them!” chuckled Jennifer, as the hospital disappeared in the distance behind them.