He knew from crossing the hospital lobby at least five hundred and seventy times that it took fifty-five paces to get across and he estimated the width at about 50% more. With eight floors of about twenty feet each, a minimum of sixty five million cubic feet of cooled filtered air were pumped through the atrium each hour. One day he would analyze what proportion of the hospital bill went towards that.
One of the elevator doors was open, seemingly waiting for him. He stepped out on the fifth floor to face a floodlit wall where “Newborn Intensive Care Unit” was surrounded by Lucite plaques listing the major donors. He went straight to the Executone intercom on the wall outside the door to the NICU, pressed the three numbers he knew without thinking and listened to the ringing buzzes. That Executone was probably the oldest piece of technology he had come across in the high-tech NICU. It was good to know that something had been designed well enough that nothing better had come along.
There was no secretary sitting at the desk in the nurse’s station after 7:00 p.m. so it took a few seconds before a voice answered.
“Oh, come on in, Mr. Brunel.” The CCTV camera aimed at the door fed a monitor inside the NICU and by now he was always recognized. It sounded like Sharon West was there tonight. He heard the click of the magnetic lock being released. Pushing the button on the wall, he waited as the doors swung open and light from the central reception area beckoned.
To the left was a waiting area with a few chairs and some really old magazines. An attempt at a sibling play area stood in a corner, empty and forlorn. On the other side of the entrance was a stainless steel sink fed by three evenly spaced faucets and he moved to the last one. He put his little Igloo cooler between his feet and rolled up his sleeves, removed his watch and his wedding ring. Plain bands were allowed; those with stones or intricate carvings were forbidden. He went the extra step, and with a safety pin he now carried, attached his simple wedding ring to his shirt pocket.
Just as he had been instructed on his first visit, he methodically scraped the cuticles and under the nails on all ten fingers, then dispensed a squirt of disinfecting soap into both hands and scrubbed for the prescribed fifteen seconds, from fingertips to elbows. Into his cupped left hand he put a small volume of antiseptic lotion, dipped the fingers of his right hand as if it was holy water, and rubbed the remainder all over his left arm, then repeated this on the other side.
Shaking his hands to hasten the evaporation, he bent down to pick up the cooler. This was how he brought the breast milk that Theresa, his wife, had pumped and collected over the last day. Each frozen 50 milliliter blue-capped tube was labeled with his son’s name and the date and time of collection. His wife seemed to know instinctually what he had confirmed on the Web, that preterm babies who received any kind of breast milk did better overall. Theresa squeezed out every drop she could for the little guy. She refused to take even an aspirin if it might make her milk unacceptable.
There was another, unlocked door to pass through, to get him into the NICU proper, a mess of a space with desks and workstations shoehorned into spaces along all the sides. There were papers, charts, post-it notes, coffee cups and water bottles, phones and monitors randomly scattered on the surfaces, and above the desks more papers were taped to the walls. The visual wasn’t the only sense assaulted. A half dozen dark doorways came off this central room and from each one, different alarms sounded. The alarms were individually distinguishable, yet when they came together, as they always did, it was an aural disaster. Each of the forty babies was connected to multiple machines with their own government-mandated warning systems and so silence was the exception in that environment.
His son’s room had only indirect light coming from the central area, with minimal illumination cast by the digital readouts in multiple colors and the running lines on the monitors. Given all those alarms, and the underlying criticality, it seemed more like an air traffic control tower than a hospital room. Quickly, though, one became aware of what to alert to and what could be safely ignored.
“Same time as usual, Mr. Brunel.” Sharon West made her normal gentle jibe as she came into the room a few seconds later. She was just starting her overnight shift, caring for his son and two other babies. Over the months of polite small talk, he had learned that she was divorced, had a special needs child of her own watched over by her mother while she worked nights and, unspoken but clear, a resigned acceptance that she was trapped into the night shift to maintain the benefits her daughter needed.
She washed her hands, put on gloves and with a practiced combination of efficiency and gentleness, did all the complex care his son needed, after which she recorded a voluminous set of numbers from the pumps and monitors onto the bedside chart. Within ten minutes, it was all done. She passed on from the day nurse that things had been relatively calm.
“Do you need anything?” she asked him. “Can I put the breast milk in the freezer for you?”
“No, thanks,” he said. “I already did it.”
She smiled warmly as she left to take care of another baby in another room.
The incubator, with its clear plastic shell atop a metal box, looked like a museum display case, holding a broken shard of ancient pottery or a rare jewel under a spotlight. He stood over the incubator and looked at his sleeping little boy. From his little body, three thin wires attached to patches adhering to his chest and side connected to the heart rate and breathing monitor. On his foot, what looked like a band-aid with a red light under it had a white cord leading to the oxygen monitor. Then there was the corrugated tubing that went from the ventilator to the tracheostomy in his neck. A surgeon had put a hole in his neck to maintain a safer artificial airway when it became clear he would need mechanical ventilation for the foreseeable future. To provide nutrition, a tube went directly into the stomach through which trickled some predigested formula, and lower down was a plastic bag over the hole through which it all drained out, unused. There had been a kind of bowel stroke and another surgeon had removed all but 5 inches of intestine. There wasn’t enough left for proper nutrient absorption so a solution of simplified sugars, fats and proteins flowed through an IV line permanently implanted through the chest and into the central circulation.
Over the many hours he had spent in the NICU, he had long come to realize that as grateful as he might be, there was a price to be paid for all these life-saving therapies. The intravenous feedings were slowly poisoning his son’s liver. Each breath from the ventilator added a little more damage to that which already made him ventilator-dependent. The oxygen needed to keep him alive in the early weeks had affected both retinas so severely that the eye doctor thought that, at best, there might be light perception. Just under the skin, a catheter drained fluid from the brain into the right atrium of the heart, because soon after delivery, a fragile nest of blood vessels in the brain had burst, blocking fluid circulation so that pressure buildup had squeezed whatever brain was still undamaged until the catheter had relieved it.
He reached in through the incubator portholes and gently stroked his son’s arm for some minutes, then dragged a rocking chair over and sat down, happy to just be there with his boy. Almost automatically his mind came back to the same puzzle he kept trying to understand. He could not describe its dimensions or constituents, it was more a thought or a feeling, without mass or energy. He first became aware of it on the day he and Theresa had seen the blue line on the home pregnancy test. It became clearer on the morning his son was born and over the last two hundred and eighty-seven days it had become more defined, but all from within his mind. He distrusted instinct and myth and superstition and still, he couldn’t deny that he was willing to do anything for this little guy, but he still could not put the reasons into words.
Nothing had prepared him for this. His life’s pattern had always been in the proper sequence. He was enrolled in a master’s program in civil engineering when he met Theresa, who was a graduate student in elementary education. His best job offer was in the same city where she wanted to teach, and a year after the move, all the arrangements were complete for her dream wedding. With his first promotion and her summer tutoring, they bought a house. On weekdays, they kissed goodbye at 6:45 a.m. and kissed hello at 6:15 p.m. On weekends, they went to the hardware store and did home repair and upgrade projects, he meticulous in the research and planning, she meticulous in the execution. Candlelit dinners at home, Scrabble games, movie nights with friends, it all felt like a comfortable old pair of blue jeans. When Theresa began to drop hints about adding another person to the picture, he knew it was the logical next step. Experience, your own or collected from previous generations, permits you to predict, and so to plan. The variables, equations and tolerances that textbooks prescribe so buildings are designed to survive an earthquake were derived from analysis of why some buildings collapsed, and others remained intact in previous earthquakes. In the same way, finishing school, getting married, establishing a career, buying a home, and all that led to starting a family.
Then Theresa, who had sailed through her pregnancy, was calling him at work from her obstetrician’s office. She confessed to having a bad headache and blurry vision that morning and now, at the doctor’s office, her blood pressure was dangerously high. They were going to admit her immediately.
At the hospital, he found her looking nothing like the healthy mother-to-be she had been to date. Her face was puffier than would be expected from crying alone, and she looked scared. He listened to the doctors, processing the message that if the blood pressure couldn’t be controlled, there was a risk of seizures or even death. The only definitive treatment was delivery but Theresa refused to consider it. They were only at 24 weeks into the pregnancy.
Through the night he sat by her bed as she tried to will her blood pressure down, while the doctors gave her medicines with the same goal. When her blood pressure continued to rise and the doctors gathered round to extract permission to perform the cesarean section to save her life, he had figured out that it was the only viable option, and overcame her objections. An hour later, Patrick Stephen Brunel was born, weighing one pound seven ounces. He was bald, with scrawny arms and legs, and no butt. A brief mewing cry was the only one he ever made in his life and then a team of blue-gowned specialists were inserting tubes and lines in multiple orifices and whisking him to the NICU. He tried to admire the precision with which everyone performed their tasks but for the most part it felt like he was in a rowboat in a hurricane.
Over the first few days, the NICU team was cautiously optimistic. Each morning he came to his wife’s room and together they went to see their child. After her discharge they listlessly passed the morning at home and then arrived to the NICU as soon as parents were allowed in. Theresa and he took turns putting their hands into the portholes. They brought a little music player on which they recorded their favorite children’s songs. Theresa started pumping and saving her breast milk for whenever the baby would be allowed to eat.
One of the doctors had told him on that first day that being the parent of a premature baby was like being on the world’s worst roller coaster ride. Days of cautious hope were ruined by a phone call or finding grim faces when they arrived for their visit, with news of a setback. Every organ seemed vulnerable; the baby needed an operation to close a tube near the heart, there was a collapsed lung, there were infections in the blood and then, the bladder. They were told about the brain hemorrhage at the one week mark, and at two months came the bowel stroke, and for a few days it was especially frightening. They did CPR at least twice, and Theresa asked the hospital chaplain to perform a baptism. By then the roller coaster passenger image didn’t fit. He felt more like a prizefighter who stepped into the middle of the ring every time the bell rang, ready to fight and then bang! a shot to his chin and he felt his brain scrambling. He would stagger around, trying to clear his head and then the bell would ring for the next round when, for all he knew, another head shot was waiting.
After a few weeks, he had to go back to work. The new routine had Theresa spending the day and he going over right after work. They met in the NICU and shared a few minutes before she left, exhausted. Yet it frankly surprised him when her OB referred her to a psychiatrist, suspecting that her increasing guilt and anger and despondency were signs of depression. It didn’t matter. She was not going to take any medication that might pass through her breast milk to her baby. For the last few weeks, all she could manage was to visit the NICU for a half hour each day and then go home to sit on their bed, and pump her breast milk.
He adapted to a new routine. Before leaving for work, he prepared a lunch for both himself and for Theresa and brought hers, along with the cleaned breast milk collection paraphernalia, to her bedside. If possible, he would knock off a little early and go home first, where he would climb up to her bedroom and, relieved, exchange as much small talk as Theresa would allow. Nine times out of ten, she would beg off dinner and he would eat alone, then get the blue-capped tubes from the freezer for his Igloo cooler, kiss his wife goodbye and head to the hospital, where he would stay until after 10:00 p.m.
Was there any way to know how long this routine would be his life? All the attempts to reduce the baby’s ventilator settings were unsuccessful and this probably meant that his son was going to be attached to the ventilator for maybe years. That led to the next question; where? Home ventilation was possible, if there was a willing and capable family with lots of support and proper insurance. Maintaining that insurance meant he needed to stay at his current job, and that meant the burden of home care would fall on Theresa. Was that even possible for her now?
As he rocked back and forth, looking at but not seeing the vital signs display, he knew that considering home ventilation was absurd. With the shortened intestinal system, it was very likely that a small-bowel/liver transplant would be needed before the lungs healed. Transplant survival rates were steadily improving, yet baby organs for transplant were in very short supply and no one could tell him if all the other problems dropped the baby off the transplant list? Would the blindness be unacceptable? Would the chronic lung disease and the ventilator? What about the likely brain damage? The doctors had estimated there was a ninety percent chance that his son would end up with at least cerebral palsy, and they used the term developmental delay when he knew they meant retardation.
He thought of a recurrent dream he’d had as a child. His parents and sister were with him and they had all gone into the ocean to swim. A fog, thick and warm, rolled over him and he could not find his family, who were back on land. He swam in one direction and then another, unsure which led back to the beach and which further out to sea. He did not panic, knowing he would eventually become exhausted, just felt regret that he would be unable to do the things he was meant to.
He came back to his son’s bedside and now forced himself to go through the analysis again. He looked at all the variables, each of Patrick’s medical issues and their likely course, how they might interact and compound each other. It was difficult to quantitate the ratio of suffering to chance of success, yet he tried, and finally he reduced it all to a series of just a few choices. For each one, he went through the permutations of outcomes. Dissecting a big project into component parts, analyzing each individually and then re-integrating the parts into the whole to come up with the definitive answer was what he was trained to do.
Sharon West came back into the room. He liked her, liked how good she was at her job and how sensitive she was to each parent. With him, she respected his space, while with others who might need more, she could be more talkative, yet she was equally supportive and non-judgmental. Over the months, they had become sort of friends, and one night, when the baby had been very ill just after his bowel surgery, she talked about ‘windows of opportunity,’ periods when the babies were so sick that stopping all support would be fatal. But those windows appeared early on in the struggle when there was too much that wasn’t known or predictable for analysis. Now each specialist only saw the narrow track of hope within their own field. None of them put all the problems together and looked at Patrick as a whole person, not as a damaged brain or diseased lungs or absent bowels.
“Do you want to kangaroo?” she asked him, meaning that the nearly naked baby would lie against his bare chest, just a little blanket covering the back and head, making it look like a joey in a pouch. The physical contact was probably why it was so good for both baby and parent, though it felt as if something less corporeal but as beneficial also flowed in both directions.
He had done this before and quickly unbuttoned his shirt and pulled the rocker up close so the wires and tubes would not be stretched. Sharon carefully isolated each one of these lifelines and then gathered them in one hand as, with the other, she expertly lifted the baby onto his chest. After the blanket was applied, they both looked up at the monitors and were pleased to see the baby’s heart rate decline from the 170s to the 150s. Everyone, baby, father and nurse, let out a little sigh.
“I’ll be out in the main room if you need anything. Just holler, OK?” she said.
“We’ll be fine. Thanks for everything.”
For a few minutes he felt every nerve ending that was in contact with his son. He could feel when the chest expanded as the ventilator pushed the oxygen in. He felt the warmth of the little life on his chest, diffusing through all the way to his heart. It caused his heart to contract, extruding out all the extraneous parts of his life to concentrate itself on this one place and time and contact. Except that it didn’t stop, his heart kept contracting to the point of pain, because the substance, the kernel around which it came to rest was so terribly small. One could calculate all the equations and create all the various models and plan for all contingencies. These were all equations, flow diagrams and blueprints and meant nothing until someone with passion, faith and courage transformed into something like a dam, or skyscraper, not an empty hole in the ground.
He carefully leaned over while holding his son against his chest and picked up the cooler. One-handed, he opened the top and removed the gun, placing it by his hand. Maybe the fact that there were no bullets might help him later. He tilted his head, kissed his son for a long time and told him that he loved him more than he had known he could love. Then, he disconnected the ventilator from the tracheostomy tube. After some very long seconds, the alarms started, and he prepared himself to hold everyone at bay for a few minutes.
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