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Home for Christmas

Home for Christmas

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 it could go.

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 wasn’t a big fan of 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. Just park in the structure. I’ll be fine.”

Jason looked at her, unsure. But a security guard was coming toward their car already, so Jennifer opened the door to get out. “Well, 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 side. She got out and walked quickly toward the sliding glass doors.

Jason finally found a spot on the 5th floor of the parking labyrinth. As he got his jacket out of the back, 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, Jason wrinkled his nose at the antiseptic smell. A clerk behind the ER desk was talking slowly and loudly to an ancient, crooked woman with a walker. “DO YOU HAVE AN INSURANCE CARD?” A man behind the old woman was waiting his turn patiently, holding a small blue Igloo ice chest. His hand was covered with messily-wrapped gauze, and blood was oozing from it. Jason started to feel woozy. A volunteer asked him 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. After taking one wrong set of elevators, and a few more wrong turns, Jason located the right room. 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. He was typing into the computer in the corner with his back to her.

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. “I’m going to start you on some medicine to slow the contractions.”

“Wait. Is the baby coming?” Jason used effort keep his voice steady.

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

The vagueness dismayed Jason. He liked precision.

Jennifer’s face tensed as 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 sharply. 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 the nurse call button 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!”

The next second 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. One of them was splashing rust-colored solution on her bare, protruding belly. Others were getting out huge syringes from some big red carts that looked just like tool chests, and ripping open blue and white packages with tubes and metal instruments Jason didn’t recognize. His head felt light, and an encroaching grey fog blurred the edges of his vision. His knees went weak, and he squatted on the floor, trying not to pass out. He made a note that there was no place to throw up but the linoleum floor. He willed himself not to. A nurse closed the door.

As Jennifer came out of her emergency anesthesia, she sensed doctors and nurses around 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 and sounds of the people, hospital equipment, alarms, and words like “get a blood gas STAT”—all melded and blurred together for Jennifer like a surreal scene 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.

Jason and Jennifer looked at each other. Jason wondered if the name they had chosen was still the right one.

“Kylie?” asked Jason.

 “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 from Jennifer’s side.

“You have to go 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 her arm to take out her IV. Jason knew he’d lost this argument. He grabbed Jennifer’s hand, kissed it, and gently put it back 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 searched for the Volvo. Where was it? Which floor? He took the elevator to the fourth floor, 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. Jason pulled up behind it. The team was securing the yellow box into position, and Jason looked for glimpses of Kylie. The driver closed the back doors of the ambulance with a clang, then drove it 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 to admissions to answer questions and fill out paperwork. He couldn’t remember Jenn’s social security number. He knew he was letting her down by being stuck in an office instead of being with Kylie.  

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, slumped into a chair, and hoped he could find his way back to the NICU. The nurse from the transport team who had talked to him at the other hospital walked by, noticed Jason, and stopped.

“Why aren’t you with Kylie?”

“Uh…”

“I’m Annie, your baby’s nurse. Come with me” said Annie. She 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. Annie looked at Jason expectantly, and he stammered into the speaker, “Uh, uh…” 

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

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

“Say hi to your daughter…” whispered Annie. 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. Her legs looked the same size and shape as the legs of the frogs he and his brother used to catch when they were kids. He probably wouldn’t tell Jennifer that. A little white mask covered her eyes. The alarms from the bedside equipment in the room started squawking in confusing cacophony, but Annie 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.” The words sounded strange.

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 didn’t say it was like being lost in a foreign country where he didn’t speak the language. He did say that he missed Jennifer and wanted to make sure both of the loves of his life were getting better. Jennifer’s eye roll hurt his feelings, but he didn’t say that, either.

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 hate that stupid tree. On day four, Jason noticed that under the tree, 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 gotten them out while they were decorating—he felt terrible for not having noticed. He picked up the littlest one and put it in his pocket.

On day five, Jennifer woke up, dressed, and made her hospital bed. She packed her things in her bag, then sat on top of the bed to wait. The doctor came in for morning rounds. He raised his eyes high over his glasses. Jennifer answered with cold calmness.

“This is the day you’re releasing me.”

“Your body has been through a lot…”

“I need to be with my baby.”

The doctor reviewed the chart, and reluctantly agreed. Shortly after, a nurse walked in with some paperwork to sign. A volunteer rolled in a wheelchair to take Jennifer down to the lobby. Jennifer protested.

“It’s policy” said the nurse.  

As Jennifer settled into the wheelchair, the nurse handed her a heavy mechanical contraption, about the size of a toaster.

“Here you go—your doctor ordered you a mechanical breast pump so you can continue to pump milk at home for your baby. I’ve got a bag of bottles here, too. You’ll need to bring the filled bottles to the NICU every day when you visit.”

The volunteer wheeled Jennifer out 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. She cradled the breast pump on her lap.

“Could you take this Jason? It’s really hurting me.”

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 kept a slow pace for Jennifer as they walked toward Room 4. 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.”

They entered their room, and Jennifer saw the little Kylie stocking hanging on the outside of an isolette. She looked at Jason. 

 “I wanted your love to be here when you couldn’t be” he shrugged.

Jason had decorated the IV pole behind the bed with little Christmas lights. 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.”

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

Annie 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 Annie lifted Kylie from the isolette.

“Well, open your top, Mama,” said Annie.

Jennifer did as she was told. Jason was surprised, but Jennifer had stripped off her modesty like her clothes at the other hospital and this gave her no qualms. Annie 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 Jennifer’s topography and pooled under Kylie’s body. Kylie squirmed and the alarms went nuts. Annie dabbed Kylie dry and tried every possible positioning of the tubing and the wires, but nothing would silence the alarms.

“My body’s all wrong,” Jennifer said to Jason. But eventually, Kylie found a comfortable position on Jennifer, and the alarms retreated into silence. Within minutes, mom and baby were dozing. Annie 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.

“She’s doing well, isn’t she?” he asked Annie after a bit, pointing at the ventilator monitors. He could tell the settings were lower than they had been, and he thought lower numbers were good on this device.

“She’s doing very well!” Annie agreed, nodding at Kylie.

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!”

The doctors and nurses proceeded to talk in the foreign language Jason hadn’t learned yet.

“This one’s a 27-weeker”—pointing to Kylie—“admitted 5 days ago. Vent settings 24/4, rate of 12, O2 34%, CXR grainy, HR elevated, possible PDA, no bleeds. A couple of bradys last night I see here”–looking at the computer screen–“but labs are clear and ABGs are good.”  

The words washed over Jennifer and made her anxious. “Want to tell us anything?” the doctor asked Jennifer directly.

 Jennifer’s mind blanked and she shook her head.

“Well, 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. Are you bringing in breast milk?”

Jennifer nodded.

“Great! Liquid gold! Are you kangarooing?”

“Emotional ups and downs? Yes.”

“Skin to skin contact? Holding your baby?”

Embarrassed, Jennifer answered again. “Oh! That, too! Yes!”

“OK, princess” the doctor blew a kiss to Kylie, “we’ll be back tomorrow!”

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 IVH. Intraventricular hemorrhage. In his brain. It’s common around here, and it can be OK if it’s small—but I’d really thought we’d escaped that. Now we just have to wait and see. And he’s having more A’s and B’s.”

Jennifer just stared at her.

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

“How long have you been here?” Jennifer asked.

Sarah recounted Pete’s six months in the NICU, reciting a litany of episodes with medical precision. Jennifer didn’t understand half the words and acronyms coming out of Sarah’s mouth, and felt as if she was listening to the doctors again.

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

“Heck no!” answered Sarah. I’m an administrative assistant. I’ve just been here a long time.” She made a 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, and they felt like she had things covered in the NICU. 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, went to the gym afterward, 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, so Sarah could get out. Jason encouraged her to do other things, but usually she simply caught up on her sleep, went online to read the NICU mom blogs, and 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. 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 a 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 mostly 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 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 just a little IV port in her hand in case she needed medicine in the future. As Kylie got better, Annie 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 I’s and O’s—her intake and outputs. Jason didn’t like weighing her diapers for this, but eventually he got very involved in keeping track of the numbers. 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 Annie’s permission.

The joy was tempered, though. In cruel cosmic balance, Pete’s journey proceeded in the opposite direction. Every day he had more equipment and tubes and wires. He became very sensitive to being moved, and was harder to get him settled when Sarah tried to hold him. The nurses often had to put him back in the crib when the alarms wouldn’t stop and his heart rate dropped scarily low. 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—but it was obvious the candle was dimming.

One afternoon as Jennifer came back into the NICU from the new hospital coffee shop, she heard Annie’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. She’d thought it was safe to be gone a little longer now. Annie raced out of the room to grab a red crash cart, saw Jennifer, and met her terrified eyes. Annie stopped just 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 in the rocking chair, staring out the window, back to the door. Pete lay pale and still in the crib He was now attached to more machines than Kylie had been on when she’d arrived—with some new ones Jennifer didn’t recognize. 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 Target. 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. A new isolette was there in the crib’s place, empty as well. Had Pete been transferred to another room? Why? Annie 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 the tears that started running down her cheeks onto the sleeve of her scrubs, leaving a dark stain. 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. She kissed his forehead, and encircled him in her arms.  

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.  

 Jennifer and Jason looked at each other with a mixture of joy and anxiety.

“Will we have monitors?” was the first thing Jason asked.

“She doesn’t need them. She’s doing fabulously,” the doctor replied.

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

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. When Jennifer was done, he pulled a knit Star Wars baby cap from the toy store bag, and quickly put it on Kylie’s head before Jennifer could object.

“Oh my God, Jason.”

“She looks just like a Porg, Jenn!” 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 Annie.

In the lobby, Jennifer and Jason reached the entryway. The glass doors slid open, and they felt the fresh air. They stopped and looked down at Kylie in the car seat Jason was holding, to make sure she was OK. They 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?”

What’s In a Name

What’s in a Name

In the neonatal intensive care unit, bad baby names achieve an almost mythological status. The stories are told and retold, like an oral history of unfortunate choices. My favorites? Twin girls named Velvet and Velveta (pronounced like the cheese). Muchanka. More twins: Heineken and Lowenbrau (Mom: “I like them beers. And I was drinking them when they was conceived.”)

Whenever the subject of bad baby names comes up, I lead with “Gus Stone.” His name was spelled just like that on the birth certificate, and on his isolette’s name tag. Two words, capital “G”, capital “S”. Every new staffer who passed his bed would ask, “Why do we have a first and last name?” (For confidentiality reasons, we only posted first names on the babies’ isolettes.) We would explain, “It’s first and middle, not first and last. His mom pronounces it like Gustave—‘GooSTAAAV.’ She’s fourteen, she thought that’s how you spell it. Don’t laugh.” And then we’d all laugh in spite of ourselves. We called him Gus Stone for his entire year-long stay in the NICU.

Gus Stone had been wounded in utero during a drug deal gone bad. His mother was hit in the abdomen by an errant gunshot meant for her boyfriend. So Gus Stone was delivered prematurely, all of about 600 grams, which means he began life the size of a large frog. He had the cards stacked against him from the beginning— born with a gunshot wound, hepatitis, and a crack addiction.

And we loved him.

To survive working in neonatal and pediatric intensive care, nurses develop a professional detachment while remaining caring. It is a difficult task to cultivate this disconnect between where the patient ends and “you” begins. At the beginning of a NICU career it is more difficult to maintain balance, but by the time you reach your professional stride, if you last, only a very few patients “get to you.” Gus Stone got to us. And he got to Annie the most.

Annie was a hard-bitten lifer in the NICU. She’d been working as an RN since she was twenty, and was now in her late thirties. She’d seen it all, she’d tell you, as she sat on the patio of the staff lounge, smoking her ever-present Camel cigarette and downing black coffee. She had been the nurse in the delivery room with me when Gus Stone was born. The high-risk delivery resuscitation team was called to the OR, stat, when Gus Stone’s mom was rushed in by the paramedics, so Annie, Leah the neonatologist, and I raced to the operating suite and hurriedly scrubbed and gowned. The obstetricians prepared for an emergency C-section, splashing orange betadine on the distended brown belly protruding from hastily draped blue surgical towels. With surgical precision, and a measure of savage intensity due to the urgency of getting the baby out NOW, they sliced a low cut across the bikini line, retracted the layers of skin, then slit the uterine Stone. Gloved hands slid into the dark, open wound and pulled Gus Stone from the only warm and cozy home he would ever know.

The surgeons continued to work on mom as Gus Stone’s tiny grey body was carried over to us, and laid lifeless on the table. With practiced choreography we received him with the professional air of those who know exactly what tasks have to be done, and performed the standard high risk delivery recovery. We gently dried him, throwing the bloody, wet towels on the grey linoleum floor as we grabbed new warm ones to keep his body temperature stable. We slipped an endotracheal tube the size of a juice box straw into his windpipe, attached the black rubber football size ambu-bag to the end of the ET tube to squeeze oxygenated air into his lungs, placed EKG leads on his chest, inserted an IV to give meds, and started an arterial line to draw blood. The bullet had grazed his left buttocks. We were shocked it didn’t do more damage considering the tiny target. Annie started cleaning the wound with a 4×4 gauze pad that completely covered his lower body. She dropped it onto the floor, opened a 2×2 instead, and said, “God. They really need to make 1×1’s for us.”

In spite of the long odds, due to the miracle of technology, advanced medical care, and Gus Stone’s fighting spirit, we were able to resuscitate him. As the baby grimaced and started waving his tiny limbs, we breathed a collective sigh of relief. He was surprisingly strong and intense for such a small neonate, like a little coiled spring, or a cat when all its muscles are contracted right before it pounces. It was then, as we were able to relax after the initial resuscitation and take stock of the situation, that his unlikely shock of wild, curly black hair first made us laugh. As Annie was laughing and straightening an electrode lead, her hand brushed his, and his tiny fingers grasped her pinky and held it. His hand was so small it just encircled her nail and first knuckle; his miniature fingernails were perfectly formed. I watched Annie looking at his hand clasping her finger and knew—“Uh oh, this one got to her…”

Annie and Leah, gowned in blue and gliding like angels, wheeled the enclosed plastic isolette holding Gus Stone quickly through the quiet night of the hospital to the NICU. I had opened the front left round portal to slip a hand in to hold the ambu bag for the quick trans-hospital run, and was squeezing rapid breaths. I braced myself around corners with another hand on top of the warm, clear box.

An empty bay was waiting for us in Room 6, in the far corner, by the window. I set up the ventilator to impossibly high pressures for such a little body, took a sample of too-dark blood from his arterial line to test for oxygenation, and made mental calculations as to how many days he would survive. I never suspected that this would be Gus Stone’s home for the next year—and Annie’s.

I got to the hospital early the next morning. Instead of heading to the staff lounge to read, as I would normally do, I scrubbed and changed into the purple NICU scrubs and made my way back to Room 6. Annie was already there. “Annie! It’s 5 AM! Did you sleep here?” I asked. A guilty look met my eyes as she said, “He coded. They were short-staffed. I just pulled a double. No biggie.” I knew better. This was definitely “a biggie.”

As we spoke, the alarms started squawking and I looked up to see the white, craggy line on the EKG monitor, previously a regular rapid rhythmic pattern, begin to jump to an erratic beat and then slow: 140, 132, 120, 98… The oxygen saturation numbers fell as well, dangerously low. I grabbed the ambu bag, and started giving him more oxygen, more rapidly, at higher pressures. Annie opened the bright red code cart

and grabbed a syringe. “Call a doctor!” she called to a nurse across the room, as the sunrise streamed in through the window.

When Gus Stone was about two months old, he developed a serious intraventricular hemorrhage–blood had leaked into the ventricles of the brain and into the brain itself. IVH is a common complication for severely premature infants. We knew all along that it wasn’t likely that Gus Stone would survive, and we knew it was even less likely that he would survive without neurological compromise. He was almost guaranteed to suffer a host of standard complications that attend severe prematurity: cerebral palsy, infant respiratory distress syndrome, severe chronic lung disease, retinal damage due to oxygenation fluctuations, and hospital-acquired infections. But the words “Grade 4 IVH” still hit Annie hard.

As we waited for Gus Stone to come out of the shunt procedure in the OR, Annie and I talked about his life in the NICU. Gus Stone had been effectively abandoned, and had become a ward of the court. The agencies in charge of his destiny defaulted by policy to “all measures” so a course of palliative care only was out of the question. Whether we agreed or not, Gus Stone was ours to hold through the continued fight for his life and to comfort through his pain.

Even if Gus Stone did not thrive, he did continue to grow. Eventually, he outgrew his isolette. Babies born with severe health problems, if they survive, are usually “graduated” from NICU to Pediatrics in a natural progression. They’re discharged from the hospital, have a subsequent health crisis, are brought into the ER, and are then admitted to PICU. Gus Stone survived, but he was never discharged because he was

never well enough. We sent for a crib from Pediatrics. So there in the corner of Room 6, surrounded by frog-sized neonates in plastic isolettes, Gus Stone achieved his first year milestones under the sterile glow of fluorescent lights of the intensive care unit. His world was punctuated by the sounds of incessant beeping alarms and overhead pages, and colored by mobiles hanging from his crib sides and toys lining the window sill.

Gus Stone loved to be held and talked to. Many very premature babies with long term health problems and poor prognoses cannot tolerate touch. When they experience any stimuli, their blood oxygenation saturation falls, their heart rates rise or crash, and they “crump” to use a common non-scientific NICU term for a baby taking a turn for the worse. Nursing staff ensconce these neonates in dark corners and try to recreate the womb with minimal touch, lambskin bedding, blindfolds, and reduced noise.

Gus Stone could not have been more different. One of the unit rocking chairs made its permanent way to his bedside, and Annie could often be found rocking “her baby” and cooing to him. It was always a thrill-ride adventure juggling Gus Stone and all his IVs, EKG leads, multiple lines, and ventilator tubing as we carefully lifted him out of his bed and handed him to Annie in the rocking chair for “cuddle time.” He looked as if he were part of the Borg with all the wires and tubes. The alarms invariably went nuts as everything was transferred, usually due merely to the technology being disconnected and then reconnected. But sometimes the ruckus was real. Gus Stone had developed epilepsy after his IVH, and we had to make a U-turn and put him right back into the crib to resuscitate him if his seizures were severe.

When Gus Stone was nine months old, he was finally strong enough and he learned how to stand. He’d deftly navigate his wires and tubes, hold onto the rails, and pull himself up. He could also yell. Annie was in the blood gas lab running a sample during this stage, and a respiratory therapist popped his head in the door and said, “Your little boy is hollering ‘Bring me my damn bottle, Annie!’” We guffawed. Although Gus Stone never learned words, we knew exactly what he meant. Room 6 became a happy little haven in the NICU.

Mom never visited, Dad was unknown. But Annie remained a stable feature. This wasn’t hard-bitten Annie BFW (before Gus Stone) with her sarcastic comments and the sardonic smirk. She had transformed into a sunny presence, her bright-red lipstick lips turned up into a happy permanent smile as she cooed and read to Gus Stone in between taking his vitals, administering medications, and performing the inevitable repeated code blues when he crashed.

And crash he did. Often.

One early morning just before his year birthday, on the way to the unit from the cafeteria, I heard the faceless woman on the overhead page intone, “Code blue, cardiac cath lab. Code blue, cardiac cath lab.” I thought no more of it until later when I watched the NICU doors crash open and a peds bed being rushed down the hall by doctors, respiratory therapists, and Annie. I caught a glimpse of Gus Stone as the bed passed by me. Something was odd. I followed into Room 6 to see if Annie needed help. I looked closely at Gus Stone—something was off. That was it, I finally realized, he had red lipstick all over his mouth and nose. I looked at Annie, flummoxed.

“There was no ambu bag in the cath lab! And the valve stuck on the one in the bed!” she said, with a furrowed brow, raising her shoulders and giving an exasperated shrug. “You gave MOUTH TO MOUTH?” I asked. In the hospital, resuscitation is always performed behind multiple shields of protection, especially for patients with known contagions and dicey histories. “You know you’re going to have to get tested for everything for the next ten years…”  Annie shrugged again.

“Hey little boy! You gave us quite a scare!” she chirped as Gus Stone awoke and made eye contact with her. He looked so small in the big crib, and something was different. A little bit of the life force and vital energy that had always radiated from his wiry body seemed to have leaked out and drained away. The grey pallor under his skin matched the cold, grey light of dawn filtering in from the window. Her smile stayed, but Annie’s eyes clouded as she sighed, “Oh, Gus Stone, Gus Stone. What are we going to do with you?”

The Lipstick Code (as it came to be known) marked the beginning of the end. In the days before Gus Stone left this world, Annie gradually disconnected. Sardonic, sarcastic Annie returned, with a heartbreaking edge of deep sadness. Gus Stone coded more and more, and every time we resuscitated him, there was less of “him” behind his eyes when he recovered. Finally he was just a shell of himself in a broken little body, and one day he went flat line and we couldn’t bring him back. Leah, the neonatologist with the beautiful face and even sweeter voice who had been the one on the team when Gus Stone was delivered, looked at Annie as she said softly, “OK, I’m calling the code. Everybody? Code called. Time of death, 9:54am.” The resident stopped chest compressions, and I unhooked the ambu bag. Although his body remained, Gus Stone was gone.

Annie disappeared into the stairwell off the main unit hallway. We saw her collapse on a step before the heavy door swung closed. We pretended not to hear her sobs. She returned to prepare the body for the coroner, disconnecting the EKG leads and dabbing away the blood that had leaked from a hurried A-line draw. Every so often she’d raise her arm and use the short sleeve of her purple scrubs to wipe away her tears, leaving a dark wet stain. Someone drew the thin blue curtain around the bay, as we left Annie alone with Gus Stone to say good bye.

References

Boss, Rene: Journal of Palliative Medicine 2008 ; Volume 11, Number 1 Bradley D: Perspectives on newborn abandonment. Pediatric Emergency Care

2003;19:108–111

Marshall, Richard E. M.D. and Christine Casman. (1980) Pediatrics Vol. 65 No. 6 June pp.

1161 -1165

Haward, Marlyse, Nancy W. Kirshenbaum, Deborah E. Campbell, Care at the Edge of Viability: Medical and Ethical Issues, Clinics in Perinatology, Volume 38, Issue 3, September 2011, Pages 471-492

Philpot T, Nobody’s child. Nursing Standards 2006;20:24–25. 6

Rijken, Monique, Sylvia Veen, Frans J Walther, Ethics of maintaining extremely preterm infants, Paediatrics and Child Health, Volume 17, Issue 2, February 2007, Pages 58-63

Richardson, Gale, Sara Hamel, Lidush Goldschumidt, and Nancy Day: Growth of Infants Prenatally Exposed to Cocaine/Crack: Comparison of a Prenatal Care and a No Prenatal Care Sample. Pediatrics, Vol 104, No. 2, August 1999

Rushing,Susan, Laura R. Ment, Preterm birth: A cost benefit analysis, Seminars in Perinatology, Volume 28, Issue 6, December 2004, Pages 444-450

Saigal,Saraj, Lex W Doyle, An overview of mortality and sequelae of preterm birth from infancy to adulthood, The Lancet, Volume 371, Issue 9608, 19–25 January 2008,

Pages 261-269

Savage, Teresa A, Karen Kavanaugh, Resuscitation of the extremely preterm infant: A perspective from the social model of disability, Newborn and Infant Nursing Reviews, Volume 4, Issue 2, June 2004, Pages 114-120

Smith, Liz, The ethics of neonatal care for the extremely preterm infant, Journal of Neonatal Nursing, Volume 11, Issue 1, June 2005, Pages 33-37

On Culture and Change

Those who live along the San Andreas Fault in Southern California are jolted periodically by the movement of the Pacific tectonic plate and the North American plate as the two outer shell pieces strain to slide over the Earth’s mantle into new positions. Their strain against resistance and release of pressure result in earthquake shock waves. This change is paradoxically both inexorable and predictable and yet inevitably unexpected and surprising to the individuals and communities that experience it.

Societal shock waves from change can alter individuals and communities as well. Identities change. Neighborhoods change. Meanings and ideologies change. Communities and individuals struggle with this tension of change. Yet change is inevitable. Sometimes it is a small magnitude change. Sometimes it is “The Big One.” A large level shockwave—The Big One as it were—in geological terms results in a radical change to the landscape. The Big One in societal or individual change results in changes that have intertwining effects on individuals, neighborhoods, institutions, and markets.

Stay tuned for more thoughts on cultural change, large and small–how this changes consumers, and how consumers change society.

Parent Experience in the NICU

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy…It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go….The stewardess comes in and says, “Welcome to Holland.” “Holland?!?” you say. “What do you mean Holland?
 I signed up for Italy! I’m supposed to be in Italy. 
(From “Welcome to Holland” by Emily Perl Kingsley–given to many new NICU parents)

Listening to parents talk about the time of acclimation after their baby is admitted to the neonatal intensive care unit is much like watching Bill Murray in “Lost in Translation” as he navigates Tokyo without knowing Japanese, staring at flashing billboards and listening to conversations and sounds that have no meaning to him. Parents describe a sound track that falls like the noises of a foreign country’s streets on uncomprehending ears: medical acronyms, beeping, chiming, flashing cacophony of alarms, overhead pages, the hiss of ventilators. How do parents create a new script to form their family collectivity? (DuFault, Schau, and Schouten 2015)


Stay tuned for thoughts on these quotes and the parent journey through the NICU, as we research improving the family experience.

The Transition to Consumerism in Health Care

The world of medical care is increasingly one of customer-centered service delivery focus, as the patient/consumer has more choices in the marketplace. However, hospitals may lag in this transition to a better patient experience. This lag is due in part to the lack of choice patient/customers have over where they are admitted for care due to third-party payers. Also, the intensely high-stakes, immediate, highly-trained medical care required of service providers for good outcomes takes precedence in many cases over a customer-centric focus. The foreign high-tech servicescape contributes to increasingly stressed patient/customer, due not only to the emotional state of being hospitalized (or having a hospitalized loved one), but also due to such things as loss of control and often mysterious service delivery practices that have been described as a service delivery “black box” (Berry 2015). Medical service providers, due to their constant immersion in the service environment, may experience what we term “black box service blindness”—an unintentional state of being oblivious to sources of fear and stress in their customers because of being highly acclimated to their surroundings, procedures, and service delivery traditions.

Stay tuned for thoughts on the tensions inherent in this transition.

The Quantified Consumer

There’s a refrain we hear often when consumers talk about dealing with bureaucracies, or with businesses with less-than-stellar service cultures: “I’m just a number to them.” It generally refers not so much to an actual number, but to a feeling of anonymity. In the age of Big Data, “I’m a number” can take on a very different meaning–communicating not anonymity, but the fact that an entity knows one down to granular detail. And it’s very much about the number itself.

We live in a world that is increasingly datafied. Third parties collect all the bytes of info we leave behind in our massive data exhaust clouds as we traverse the online landscape. These entities quantify us with our own data. Things not previously quantified are translated into scores as companies try to make sense of the data.

Sometimes the scores that are generated from the collection of our data are shared with us by companies or institutions. Our dataist paradigm leads us to trust in numbers as objective and true measurements. So when companies or entities quantify us in some manner, we tend to accept it.

In recent research analyzing consumers of credit score products, my co-author and I find that consumers who are quantified may take on the resultant score as part of their identity, translating the score to a narrative arc of self. What’s really interesting is that these consumers show similar ideological characteristics to those in the quantified-self movement. To a greater or lesser extent, they are the number. The number is them.

This opens up all sorts of questions about consumer identity in the age of company datafication and consumer quantification.

What’s in a number? We are, apparently.

DuFault, Beth Leavenworth and John W. Schouten (In press) “Self Quantification and the Datapreneurial Consumer Identity.” in Consumption Markets & Culture https://doi.org/10.1080/10253866.2018.1519489