Alex

The Fathering of a Preemie

Jeff Stimpson

• Publisher: Academy Chicago Publishers
• Year: 2015
• Print ISBN: 9780897335287
• eBook ISBN: 9781613734667
• Edition: 1
• Topic: Social Sciences
• Subtopic: Social Science Biographies
• Index: Social Sciences

Nearly half a million preemies are born in the U.S. every year. But like most people, Jeff Stimpson, the father who wrote Alex, never gave premature babies a thought beyond the cliché of medical miracles. Many of these children grow up with special needs, necessitating an increasing and ever-controversial burden on society. Medicine is creating not only a new population of individuals, but a special and growing population of parents and families. Alex was born in June of 1998. He weighed 21 ounces. He spent the first year of his life in the hospital. This is the story of his first years. It's a story of doctors, hospitals, conferences, hate, love, gratitude, envy, frustration, joy, and worry. It's the story of a preemie.

Stimpson saw his son get a spinal tap without anesthesia (it isn't given to micro-preemies) and three times witnessed Alex stop breathing-once on his lap. Stimpson and his wife were at the hospital every day, and there they encountered not only how far the science of saving preemies has advanced but how far it hasn't, and how far healthcare and other professionals need to go to understand what parents go through when their infant lives in a hospital. The Stimpsons got a crash course in life behind the billboard of medical miracle, and learned how care of preemies can greatly differ, and, perhaps most important, how patients' families must learn to be consumers when trying to find that care. What keeps a family going when a child spends a year in the hospital? In compelling prose, Stimpson traces the life of his child from birth to kindergarten: four wings in two hospitals; coming home with a roomful of medical gear and round-the-clock drugs and nursing; the gains and downturns of home therapy through Early Intervention; finding and prospering in a special-needs preschool; a diagnosis of autism; and the ongoing battle to give Alex a fair shot at childhood, and at life.

JULY TO NOVEMBER, 1999

ALEX IS HOME, and it’s been a strange week:

—Throughout the July Fourth weekend, New York City is 100 degrees and smothered in humidity. A few minutes after ten p.m. on July sixth, the night before Alex comes home, our lights dim. On the eleven o’clock news we hear that upper Manhattan, including the neighborhood of Alex’s hospital, is blacked out. No traffic lights, no subways, no feeding pumps or air conditioning except that allowed by a grumpy hospital generator. Jill and I go to bed hoping Alex is asleep.

At midnight we hear yelling on our street, words of warning ricocheting up the hot sides of the apartment buildings. Something pops and sizzles in the ninety-degree night air. Cops in reflective yellow vests herd knots of people up the sidewalk through thickening smoke. I hear the cops warn us all to get inside and close our windows. “It’s poison!” I hear a cop say. A transformer has overheated under our street. The resulting buildup of gas has blown a manhole cover through a car and set it on fire.

In our bedroom, I turn on the air conditioner and it wheezes—Con Ed has turned down the power, and all I can think is, “Alex’s breathing equipment runs on electricity, and he can’t sleep on a night like this without air conditioning. A good father would be able to give him these things.”

Jill invites one of the neighbors, a big guy named Ruben, into our dark apartment. “Nobody will get any sleep tonight,” Ruben says. Later I do my best to prove him right, lying on my moist sheets and listening to the air conditioner grind and suck for electricity.

—On the afternoon Alex is discharged, the nurses order pizza. They order it from Jersey, because the power is still off in the hospital and the surrounding neighborhood. The lights are dark; a single fan moves the air. But it’s cool. The nursing supervisor, who is also named Jill, tells us things her grandfather used to scream when they tried to take him to the hospital, like “My leg is dead!” and “Your nuts have nuts!”

About four o’clock, the big ambulance guys show up. They strap my seventeen-pound baby into a simply enormous stretcher and wheel him out to the one working elevator, which is operated by a guy named Walter. “You’ll get an express ride!” Walter says as he drops us all the way from the eleventh to the first floor, even though people are waiting on nine. When we pass the ninth floor, somebody bangs on the other side of the door.

—That first night, our circuit breakers keep cutting out. Alex’s oxygen condenser—a machine the size of a baby carriage that filters the nitrogen from room air—takes too much juice for our apartment, apparently. Around eleven p.m. we hook him up to a green oxygen tank. As Alex gets some kind of treatment or medication every two hours, we have twenty-four-hour nursing. At three a.m. the night nurse knocks on our bedroom door and says the tank has run out and she doesn’t know how to change it. At three a.m. we call the equipment company and get the salesman on Long Island who says, yeah, okay, he’ll bring us a few extra tanks and he’ll be there in a few hours.

When he reaches our apartment around five, he does not shake my hand. We maneuver the tanks around the crib, and he notes that we had one of the flow valves on too loose. He goes away. Next morning he and I speak around nine and I ask him how he is. “Tired,” he says. But he does give us a tank of liquid oxygen that will provide a few days’ backup air. He also brings us a long cannula tube that will reach anywhere in the apartment. In time we discover that the tubing will reach to the kitchen sink, for it’s there we will bathe Alex while he scans our cupboards, calendar, and fridge magnets with eyes wide and brown.

—When he lived in the hospital, I got a hint of Alex’s schedule from the nurses. If he didn’t nap during the day he’d crash about seven p.m. and sleep through the night. If he did nap he might stay up as late as eleven, arms and legs kicking, gurgling into his pacifier and really just happy to be here. At home, I should demand that he go to sleep earlier, but I don’t.

—Thursday and Friday we all begin to settle down. I give two twenties and a ten to an electrician who stalks our home with what looks like a tuning fork and a piece of wire until he finds an outlet that can accommodate Alex’s air concentrator. Turns out our whole apartment—which is owned by a guy who had a lot of money about the time I was working twelve hours a day at an upstate newspaper—was wired through only two of our five circuit breakers. Why would anyone wire an apartment like that?

“Who knows?” the electrician says.

Around this time, a nurse criticizes us for having no sterile water and later, as we sleep, she tears the mattress of our changing table. Still later we learn that she complains, “There’s no place to put my feet up in their house!”

—On Saturday afternoon we begin to teach Alex how to applaud. The day nurse, a Jamaican giantess, has a lovely singing voice, and claps her big hands softly in front of Alex’s face. His eyes track the sound. In the living room we spread an afghan and lie Alex down. I clap for him as he watches. Then he brings his own hands together. His fingers tangle on his first try, but the next time the palms meet and there’s a tiny slap.

—Our friends Heidi and Teddy drop by on Saturday night. We decide we want pizza and I go to get it. The pizza place is closed, however, and I head back thinking that we’ll order Chinese food. Back in my building I step from the elevator and hear hammering. I wonder which loony neighbor would be driving a nail when my baby has to go to sleep. I open my front door and there sits Alex, in Jill’s lap at the dining room table, clutching his silver rattle and banging it on the table. Bang bang bang on the table. Later we put Alex to bed with his nurse to watch over him, and settle in the living room to eat egg foo young and watch The Shawshank Redemption. “This night has been a long time coming,” I whisper to Jill. She nods.

—Nothing much happens on Sunday, except Alex and I snooze on the couch. He lies on my chest and I listen to the unbroken whiz whiz whiz of his breaths through the cannula. When he stirs, I pat his back until his eyes close again. This is the first weekend in sixty that Jill and I did not have to go to a hospital.

—Monday is busy. I return to work. Jill calls in mid-afternoon. “I’m having a luxurious day,” Jill says, “after all these months. Know how he gets wild in bed with his arms and his legs? He got hysterical. He was like laughing and crying at the same time.”

The tired home-equipment guy calls to say that we are not covered for having both the liquid oxygen and the condenser. He says we can call our insurance company, and that sometimes insurance companies pay attention to parents, but maybe Jill and I should decide which we want to keep. He says the mayor of New York surely won’t let Con Ed get away with another bad blackout. He says he’s ramming his head against the wall for our case. He says we should let things calm down for a couple of days and then he’ll get back to us on Wednesday. I get the feeling that he wants some of our equipment for another client.

Monday is the first night I come home from work to my son. Jill goes to an infant CPR class and the night nurse is a little late, so I put a plate of turkey and cold chicken and bread on the living room table, and cart out Alex and his tubes and clap him in the highchair. He raps on the wipies box and watches me eat as we listen to Scott Joplin. “A lot of people are rooting for you, Alex,” I tell him. I finish my chicken and before you know it, it’s time for his eight o’clock meds.

Monday night we have a new nurse, Katherine. Jill thinks some of our home nurses are idiots, but Katherine is excellent. She puts Alex to sleep by putting him face down on a blanket across her lap. Jill comes home from CPR and tells me about the other parents there. They talked about falls and scrapes and about how terrifying it is to see your child bleed. Jill briefed the instructor before class not to ask her how old Alex was and what’s he’s doing now. “We are really on a planet all by ourselves,” Jill says.

—On Tuesday I call the insurance company. Absolutely you’re covered, the woman says, adding that our home equipment company is not the one to tell us what is and isn’t covered. I ask Jill if she knows the best cure for a nervous breakdown. She asks me a couple of times what’s happening, but I never really do answer and we get on to something else. I look at Alex and marvel that my mother, who died of cancer last September, will never meet him.

—On Tuesday night Alex passes out at 6:30. Jill and I rent Rushmore, in which Bill Murray plays a businessman who can’t believe his teenage sons are wrestler jocks. They lock him out of the family limo and ignore him while he dives drunk into the family pool. I think how Alex will never have a limo or a pool—he’ll be lucky to make it to Labor Day with the lights on. It’s okay with me if he wants to be a wrestler.

—It’s cool all week—I’m surprised how well I sleep—but it’s supposed to get hot again on Friday. On Wednesday, I call Con Ed to arrange for a backup generator to power Alex’s concentrator. Jill waits at home for a carrying case for Alex’s feeding pump, a delivery due earlier in the week. The Con Ed rep says our pediatrician has to send a note to some back room in Flatbush to get a utility inspector to our apartment sometime, and as the English of the customer service rep sizzles and pops and finally goes out on my phone, I realize maybe we’ll get what we need by Labor Day.

The week has given me the impression that beneath the hospital level of healthcare sits a substratum of drivers, salesmen, and moonlighters who, if I held a pistol to their heads, would admit that they don’t care what happens to Alex. Other than that, there’s not much of a conclusion to the week. Jill calls me at work to say she’s spending twenty minutes cleaning up “a little flood” caused by a nurse who for some reason dumped Alex’s bath water in the kitchen trash can. It takes me six phone calls to confirm the ambulance needed to take Alex to his doctors’ appointments on Thursday morning. I tell our pediatrician about Con Ed needing a letter. He has three offices and everybody in Manhattan seems to know him. He says he already sent one letter but can kick out another in a couple minutes, that’s no problem. It isn’t a problem if you’re in the real world. I guess I thought I’d be there by now.

I spend Alex’s second week home worrying about electricity. I run the air conditioners in rotation. Jill turns on a light, and for half an hour I watch for the flicker. The blanket of gray-brown haze attests to how New York is wrapping up its third heat wave of this summer. Today it was ninety-seven. Yesterday it was ninety-eight. Saturday it was ninety-nine. The Weather Channel—suddenly my favorite—said that with the humidity it was closer to 105. “Heat Means High Tension” says the New York Post. “All eyes are on Con Edison today as sweltering temperatures bake the Big Apple for a fourth consecutive day.”

“No relief in sight,” adds the National Weather Service.

I live where heat waves are infamous, where heat seeps in around June. By July, usually around the Fourth, a high pressure system parks off Bermuda and twirls the atmosphere clockwise, picking up tropical stuff in the bayou. For the next eight weeks the air entwines New York buildings, apartments and lives. The cheeks of subway riders shine. The air turns to sludge. The kiss of air conditioning as you walk past the door of a nice apartment building teaches you the hard way how the Hamptons came to be. Every hour you survive is an hour closer to September, and you look forward to another hour passing.

The blackout when Alex came home was amazing: no traffic lights, no storefront neon, no feeding pumps or respirators driven by public power. The largely poor populace opened hydrants and sat down on sidewalks to joke for TV crews. The mayor threatened to sue the power company, Con Edison. Con Ed trucked in ice.

“I think that I’d prefer to have the city not in the kind of precarious position that we’re in now, where whenever we have a hot day we have to worry whether there’s going to be a cut-down in electricity or a blackout,” said the mayor of New York. I agree.

I call Con Ed. They ask me how much reserve we have if the power goes off. I say eight hours. “That’s a lot,” the guy replies. They’ll call us ahead of time if there’s going to be a blackout. They promise.

Jill says my concern is good and normal. I feel that whatever life I can give Alex comes through a wall outlet. I tell Jill to take it easy on the halogens until the heat breaks. I ask her not to use the microwave while the TV’s running. We won’t run both air conditioners on high. I touch the plug of the concentrator to see if it’s warm. I think about a nurse who probably still doesn’t know how to change a flow value, let alone change one in the dark.

Before he left, the electrician pointed to our living room halogen lamps and said that they use a lot of power. He pointed to our overhead lights, neon that can bathe half our apartment in the kind of glow enjoyed by jail inmates or students in crowded high schools. “Those ceiling lights, those are good lights,” the electrician said. They’re also the kind of lights no Con Ed exec would be caught pale under, I bet. I bet that the sons of Con Ed execs sleep in air-conditioned bedrooms. I bet they have air, and I bet they have power.

Each night now, I get myself home around six o’clock. Jill has spent the day with Alex, usually in the apartment because before we can go out with Alex we have to secure a yard-long oxygen tank to the bottom of the carriage and make sure he’s not sitting on any of his tubes. Sometimes Jill has the energy to get him set up; other times she rents a movie and plays with him in the living room. When I get home, Jill goes out for a walk.

I set about giving Alex his six p.m. cocktail of medications. He gets a dozen or so meds at six—just as he does at eight and ten p.m., and two, six, eight and ten a.m. At six, he gets .3 CC of Simethicone and two CC of Cisapride, plus a “neb.” The neb is given with mist from a nebulizer and consists of three liquids: half a vial of Intal, 0.2 CC of Albuterol from the tiny white bottle that looks like a cookie jar from a doll house, and three CCs of saline water. I lay out the syringes and the “acorn” of Alex’s nebulizer and put his feeding pump on “pause.” Then I pop the cap on his feeding tube and stick in the Cisapride and the Simethicone and turn the pump back on. As the meds snake through the tube toward his stomach, I take the plastic “acorn” with the Albuterol and screw on the top of the mister and hold it in front of his face. If Alex is asleep, I prop the neb in front of him using Beanie Babies and play Fuji Golf at the computer.

When the neb ends, I take the little padded thing and whack Alex on the chest and back. I think he regards this as a massage, but it’s to clear crap out of his lungs. He likes when I sing to him and whack him in time to the song. His favorite song seems to be the 1974 hit “The Night Chicago Died.”

“You just have to get into a routine,” says Howard, who has a grown son and daughter. Howard has said a lot of cute things about Alex. Once, when Alex was still in the hospital, I told Howard I was leaving work early to give Alex a bath. “Oh no,” Howard said. “He’s going to give you a bath …”

Bath time is next. Verifying that the meds have run through, I unplug the feeding tube from his stomach, close the little catch—sometimes a drop of yellow formula oozes out—and peel the pulseox probe off his toe. The probe is an inch-long strip of wire and thin plastic attached to about three inches of bandage. The pulseox monitor gives perfect readings until Alex’s foot moves or he sweats. I peel off the diaper—wet? feel? oh yeah—and place him in the tub on Jill’s legs. The one therapist w...

Table of contents

• Cover
• Title Page
• Copyright
• Dedication
• Contents
• June to October, 1998
• November and December, 1998
• December, 1998, and January, 1999
• February to May, 1999
• May and June, 1999
• July to November, 1999
• November, 1999, through March, 2000
• March to May, 2000
• May to July, 2000
• July to November, 2000
• December, 2000, to June, 2001
• June to September, 2001
• September, 2001
• September, 2001, to June 2002
• July, 2002, to July 2003
• July to September, 2003
• Epilogue: May, 2004
• Recommended Resources
• Photos