I wrote this in 2006, when Cedar was 11 years old, but I’ve never published it anywhere so I thought I’d post it here. Cedar turns 19 on March 29, 2014. I’ll add some more photos when I get a chance.
The first days of parenthood were a little bumpy for Diane and me. Diane felt her first contraction at 5 p.m. on March 28, 1995. I dragged a futon into our dark living room so we could watch the northern lights out our picture window. We were living in a cinder block house on a creek outside International Falls. It cost us $300 a month in rent. I had a good job with good insurance at the local community college.
At about 11 p.m., we headed into town to the hospital. Diane had her crock pot full of ginger and hot towels, determined to have a natural birth. When the nurse tried to start an IV, Diane said she’d rather not have one. The nurse gave her a look of confusion, like she’d never heard of such a thing. We were liberals from the city, and all our friends were having natural births.
Diane, whose physical strength is unmatched by most women (and men), lasted a few hours, but eventually she was so tired and in such pain that she gave in and took a shot of Demerol. The hospital didn’t offer epidurals, so narcotics were the best they could do.
A few hard hours later – two hours of pushing, with no “urge to push” – I saw the baby’s head. Soon there were shoulders and WHAT IN THE WORLD and the rest of the baby – a beautiful baby girl BUT WHAT IS THAT THING ON HER BELLY?! It looked like a little globe of the world to me, purplish and swirling with oceans and land forms, a baseball-sized earth fused to her tiny tummy.
The doctor, who was delivering her first baby, not counting residency, was cool and confident: “It’s called an omphalocele,” she said. “Some of her organs are in her umbilical cord. She’ll need to go to Duluth for surgery, but she’ll probably have a normal life – except she won’t have a belly button.”
I choked up as I looked at Diane. “She has a problem,” I said.
Diane was smiling. “She’ll be okay,” she said. “She’ll be okay.” I figured it was the drugs, or the relief of being done with the whole ordeal of childbirth. I knew better. I knew our baby would die.
They wrapped the omphalocele in something that looked like Saran Wrap (Diane informs me that it was Saran Wrap), swaddled the rest of her in fuzzy blankets, and started loading up the ambulance. A freezing rain was falling, so a helicopter was out of the question. Diane had to stay behind because she needed surgery to loosen the placenta, so I rode with a nurse and two EMT’s in the ambulance. Cedar was wide awake and looking around, lying in an incubator.
We knew the baby would be Cedar Bond (Diane’s maiden name), whether it was a boy or girl. Diane and I are tree-hugger hippie types, and we had spent a lot of time among the cedar trees hooting for spotted owls and looking for bird nests (no, really). In her travels, she had once met a girl named Cedar, and I was a fan of the piano player Cedar Walton. It seemed like the right name, even though everyone looked at us funny when we told them.
The 150-mile drive to Duluth took about an hour and a half. I checked Cedar into the neonatal intensive care unit, and right away they started preparing her for the first of what would be five surgeries in three weeks.
The doctor explained that a developmental problem had kept her abdominal wall from closing, so some of her organs had moved into her umbilical cord. It would take a series of surgeries to bring the muscle and skin over the pancake-sized hole in her abdomen that would result from cutting away the omphalocele. They would have to stuff her organs – including the very sensitive liver and some of her intestines – back into her abdomen and pull the muscle and skin together. It would take some time for it to stretch and grow, so the opening would be covered with gauze until that was possible. Little Cedar would be on paralysis medication until the final surgery, to keep her from tearing the stitches. She would also be on a ventilator, because the paralysis medication would keep her from breathing.
I couldn’t get my head around it. I had never thought about babies going under the knife or being put on ventilators. To me it meant she was on the brink of death. A nurse brought me a clipboard full of scary consent forms leaving my brand new baby in the care of strangers.
This was nothing like I had imagined it. We were supposed to be sitting in the hospital room in International Falls by this time, cooing at our happy little newborn, looking into each other’s moist eyes, and smiling at our luck. Instead I was alone in a strange city, in a strange hospital, in an unimaginable circumstance.
Thank heaven for friends and family. When I left the NICU, Dana Munson and Scott Brownlee – two former roommates of ours – were already there to meet me. Word had gotten out that our baby was in trouble and had been taken to Duluth, so they had dropped their responsibilities and driven up from the Twin Cities. They were the first in a steady stream of visitors during our three weeks in Duluth: Tim and Glenys, John and Martha, Kenny and Monica, our Moms and Dads, Becky and John, Jeff and Linda … It was amazing the kind of support we received.
The first surgery went fine, but it was hard to see what they’d done to my little girl. She was all puffy from drugs and had a four-inch s-shaped wound up her belly. She was utterly still, lying on her back, with tubes and wires sticking out of her tiny body. I looked around at the other babies in the room. Most of them were preemies in incubators. At six pounds, Cedar looked huge.
I’m guessing a lot of dads in Neonatal Intensive Care Units develop unusual bonds with nurses, and I was no exception. The nurse who got Cedar situated was named Jana, and I’ll never forget her name or how kind and supportive she was. I’m also guessing a lot of moms respond to their NICU experience the way Diane did: by becoming a nurse.
The social worker came and gave me a room in the hospital. Diane arrived the next day and was way more happy and optimistic than I was, a perfect counterpoint to the worst-case-scenarios playing out in my head – pictures of people dressed in black, huddled around a tiny coffin in the cold and snowy Minnesota winter. Diane had a scientist’s view of the whole thing: It was all just a procedure, accomplished numerous times by professionals. To me it was the first ever case of something so terrifying and bizarre. Even the doctors must be shaking at the thought.
The truth turned out to be somewhere in the middle.
It took two more surgeries over the course of ten days to close up her belly, after which they assured us she would be off the ventilator and on her way to recovery. So we waited. I commuted back and forth from International Falls to teach my classes, but each time I got back, there she was on the ventilator. They’d try to turn it down and let her breathe on her own, but each time we’d watch the pulse oximeter go from a healthy level of 92, 94, 96, down to 90, 88, 86, 80, and they’d fire up the breathing machine again.
One of our neighbors, a teenage boy named Slade, with a preemie in an incubator, told us he was sure Cedar would be okay because he got her on “a really big prayer chain.” We would end up meeting others with greater problems than ours. We sat up late one night when a couple came in whose baby was so malformed that the doctors and nurses couldn’t do anything for it. The mom and dad, who was a dwarf, simply had to sit there over the bed and watch their baby die. It was the saddest thing I had ever seen.
Not all our contact with the medical staff was positive. One evening a nurse came on for the late shift and complained to Diane that she had been assigned to “the sickest baby in the whole NICU.” Yeah, that was Cedar.
One night one of the nurses discovered a heart murmur, so they did an echo cardiogram and discovered a hole in her heart – an atrial septal defect. They assured us it was no big deal but could be fixed with a little open heart surgery in Minneapolis. That was probably what kept her from breathing on her own.
No big deal? Her heart was the size of a walnut.
Diane and Cedar flew down to Minneapolis in an airplane while I drove down from International Falls. That afternoon they gave her something called a barium enema so they could do an x-ray and see how her gastro-intestinal tract looked. We watched in surprise as the blue dye traveled up through her abdomen into her chest. Suddenly the doctors knew what the problem was. She had no diaphragm on her left side, so when the surgeon in Duluth pushed her organs back into her abdomen, some of her intestines migrated up into her chest and compressed her lung. That’s why she wasn’t breathing. We learned later that it the surgeon should’ve known to check the diaphragm before fixing the omphalocele, since the two are often related anomalies.
That night we met with her cardiologist and the heart surgeon, Dr. Helseth, a doctor renowned for his big hands, gruff bedside manner, and surgical miracles. They told us they would do two surgeries the next morning: one to fix the hole in her heart and another to stitch together her diaphragm, using a synthetic patch or some peritoneal tissue – gauzy stuff that surrounds the organs.
The next morning we waited in fear during the three-hour procedure. We called our friend Ian, who was a doctor in Canada, and he reassured us. At one point the cardiologist came out to tell us she was on the bypass machine and everything was going fine. I didn’t believe him, but it turned out to be true. The surgery went well, and they told us that in a few days time she’d be better than new.
The scene in the Intensive Care Unit was even stranger than the NICU in Duluth. No longer was she the biggest kid in the room. She was surrounded by big kids, teenagers, even some adults who had severe problems and had been taken care of at Children’s Hospital since they were small. Later we met parents of children who had lived their entire lives in Children’s Hospital in Minneapolis.
Cedar was lying on a twin size bed, which made her look tiny – the opposite of the NICU, where she looked big and healthy compared to the preemies. She had large tubes sticking out of her chest and draining fluid into containers that hung from the side of the bed. It didn’t seem possible, but she had even more wires and tubes in her than she had in Duluth, with the usual monitors beeping and lights flashing. We were growing accustomed to it, and with the rosy prognosis, none of it seemed quite as bad, even though Cedar was still on paralysis medication and breathing through a ventilator.
Again, we were taken care of by friends and family, who came to visit regularly. One of the most special, but most difficult, was from our friends Jim and Debbie, who had just given birth to their first child, Miles, the week before Cedar was born. After complications from a home birth, Debbie and Miles had both been flown to hospitals in the twin cities where it was touch-and-go for both of them. Both recovered during the weeks we were up in Duluth with Cedar, and a day after they checked out of Children’s, we checked in. We were happy for them, but jealous too, when they brought Miles and his oxygen tank in for a visit.
After a few days, the nurses tried again to wean Cedar from the vent, but again, her little lungs couldn’t breathe on their own. This was the worst possible news. They had done everything now, and she still couldn’t breathe. Now we were dealing with Ear, Nose and Throat doctors, Doctor Sidmund and Doctor Brown.
They decided to send a little camera down her trachea and into her lungs — a bronchoscopy — to see what the problem was. Doctor Brown, a well-dressed little man who reminded me of George Will, drew us a little picture with a smiley face and a trachea and two lungs, and explained the procedure to us. “This is her breathing tube. It’s called the trachea.” Diane had a Master’s degree in zoology. We were insulted.
Again, they wheeled her off to surgery, while we imagined a sharp instrument being jabbed down her throat. They came back and told us her left bronchus, the main branch from the trachea to the lungs, was almost completely blocked. In all likelihood, Cedar would need a tracheostomy, a hole in her neck, and would need to be on a ventilator for two years or more, until her airways had time to grow and heal. That was the best-case scenario.
I was devastated, thinking about bringing her home to our cinder block shack in the middle of nowhere, watching her learn to crawl while tethered to a respirator, listening to the machine’s breathing for two years.
Imagine our surprise when, the night before Cedar was scheduled for a tracheostomy, she pulled her breathing tube out and started breathing on her own. Suddenly she was the little baby we had dreamed about during the naïve and happy days of pregnancy. She was moving and looking around again, like she had on the drive down to Duluth. She had no tube down her nose or mouth to do her breathing for her.
Doctor Brown theorized that when her intestines had pushed up into her lungs, the main stem bronchus had been bent – kinked like a garden hose. When they went in for the bronchoscopy, it was closed off, but in the intervening days, it slowly popped back into shape. They did one more bronchoscopy and Dr. Sidmund said, “You could drive a Volkswagen through it.” I had never been happier.
During the next week, Cedar got stronger and stronger. Thanks to Diane’s dedicated breast-pumping during those first five weeks, Cedar even learned to nurse, which she did with all the wild hunger of a healthy newborn. Grandmas and aunts and uncles finally got to hold her, and I finally got to rock her to sleep at night.
On Mother’s Day, 1995, six weeks after her birth, we drove our baby home to International Falls, after a brief stop in Cambridge to see Jim and Debbie and Miles.
Cedar had one more brush with death when she was eleven months old. She got pneumonia and was taken down to Hibbing, where they came to suspect that the makeshift diaphragm Dr. Helseth had created out of peritoneal tissue had ruptured. They would have to do another surgery to fix it. They did, and were able to pull the muscles together for a much stronger diaphragm, but after the surgery, everything nearly went to hell. In the recovery room, Cedar’s oxygen saturation level started dropping, and her blood pressure was going haywire. An intern was there and began to suspect something was wrong. He made a quick call, and suddenly a whole team of doctors and nurses were in the room, and a stern voice told me to get out of there.
A few minutes later they emerged, wiping their brows and smiling. Cedar had suffered a pneumothorax, a collapsed lung that could’ve killed her, if that heads-up young doctor hadn’t intervened.
But that wasn’t the end of our second adventure. Once again, they couldn’t wean Cedar from the ventilator for the first week after her surgery. They had expected her to be off the vent within a day or two. Again, they took her for a bronchoscopy, and again, her airway was totally blocked. During the next few days they puzzled over what had happened and what they could do, and again they told us she would probably need a tracheostomy and need to be ventilated for an indefinite period of time.
It was like a recurring nightmare. There we were watching the oxygen saturation monitor again. With the ventilator breathing, it was a healthy 96, 98, 100. When they turned the pressure down to see if she could compensate, the number would drop again. 94, 90, 86, 80…
About 12 days after the surgery, Dr. Brown came in and said, “Wasn’t this the girl who pulled her tube out and started breathing on her own a couple weeks after her last surgery?” We said it was. He wondered aloud if the same thing had happened as last time: a kink in her lung that would eventually open up again. The garden hose analogy.
Sure enough, the next day they weaned her from the ventilator and finally let her wake up and start nursing and moving around again.
She was not her usual happy self. She seemed angry and morose, like someone had offended her deeply, but she wasn’t quite sure how. But when Jim came to visit, she recognized him as someone she knew. She smiled, and I knew she’d be okay.
It took years for me to sleep through the night. Every time I woke up, I would go into her room and put my hand on her chest, just to see if she was breathing. It was a constant battle to get her to eat and gain weight. In height, she stayed in the 25th percentile, but her weight never made the chart. We fed her anything we could to fatten her up, including Cheerios with butter.
She fought off annual cases of pneumonia for her first five years and is now a slight but healthy 11-year-old. She lives next door to her old friend Miles and has a nine-year-old brother named Leif. She tends to be pensive and introverted, but she has bursts of childish joy. Like many firstborn children, she is very aware of the rules, and she herds the younger neighbor kids around like an old schoolmarm.
I knew as soon as Cedar was born that I wanted to have another kid, which we did, two years later, when Leif was born. We were between homes. The place we rented in International Falls had sold, so we were living in a cabin at a resort on Rainy Lake. In the evenings I’d watch Jordan beat the Jazz in the finals, or motor around Rainy Lake in a rental boat. On the morning of June 12, 1997, Diane woke up with a severe contraction. “I hope they don’t get any worse than that,” she said. Two hours later, Leif was born, a black-haired, sharp-featured baby who would develop into a round-faced blond-haired boy. Two years after Cedar’s birth, we finally got those two days of relaxation in the hospital.
I know, I know, Cedar and Leif? Like I said, we’re nature lovers, but in fact Leif was named after a student of mine, a sweet young 18-year-old who loved his mother, one of Diane’s nursing instructors at the college where I was teaching and she was getting her LPN. Diane was nervous about having a boy. She grew up with two sisters and thought of boys as something foreign. She was afraid he wouldn’t love her, no matter how much I told her she was crazy. So we named him after a kid who loved his mother, Leif, pronounced “Lafe,” with a long “a.” It didn’t hurt that Leif means “beloved.” It didn’t take him long to grow into his name.
Two weeks later, we moved to an old farm an hour north of Minneapolis, which we had purchased with Jim and Debbie, my brother Jeff and his wife Linda, and our friend Dana, who is now married to our friend Cyndy. Cedar and Miles are the oldest of the seven kids in our “intentional neighborhood.” Leif comes next, then Olivia (Jim and Debbie’s second) and Audrey (Jeff and Linda’s first). Bringing up the rear are Louis (Dana and Cyndy’s only) and Frances (Audrey’s little sister).
The nine years since Leif was born are a blur of images: cold nights driving the kids 45 minutes to Isle to take pictures of high school basketball games for the newspaper, while Diane was at work at the hospital; a crazy relay race – Diane handing them off to me in the driveway, me handing them off to her in a parking lot somewhere, or picking them up at daycare where I had to wrestle with those evil car seats, which we switched from one lousy car to another a thousand times over five years; vacations to Disneyworld, more for the parents, who would remember it all, than the kids, who were young enough to forget all the good things we did for them; trying to feed the little monsters, every bite a small victory in a protracted war.
I could be a better father, but I couldn’t love my kids more than I do. They’re not always the ones who want to crawl in bed with me. Sometimes I want to crawl in with them.
The other night, Leif couldn’t sleep for coughing. We were afraid he had the flu, which has been killing too many people this year, so I took him to the ER.
He was fine. He didn’t have the flu. He fell asleep in the car, and I woke him up when we got home because he’s getting too big to carry. He stumbled up to his room and said, “Dad, will you lay down with me?” I was hoping he’d ask. I fell asleep on his bed for a while, then got up to go to my room. I stopped in Cedar’s room on the way, bent over and listened, just to see if she was still breathing.
Epilogue: Cedar is now 19 years old and attending college in Chicago, where I am unable to check on her breathing every night. We’ll probably never know what caused Cedar’s developmental problems, be we suspect it might have been due to pesticides. The summer Diane got pregnant, we were living in a remodeled barn in rural Minnesota about 40 miles east of Fargo. One day early in her pregnancy a crop duster came over and sprayed the wheat field that came right up to our back deck. Our neighbor’s grape vines were killed, and the leaves on our tomato plants shriveled up.
Although Cedar was able to nurse for more than two years, we eventually found out she was allergic to eggs, chicken, and dairy. (Turns out that Cheerios and butter and glasses of half-and-half were not such a good idea.) Other than that and the lack of a belly button, and the vampire scars on her neck from the central feeding line, and the chest tube scars, and the scars from heart surgery, she’s a normal nineteen year old with a normal life.
I always thought of her as my million dollar baby, but the medical bills actually only came out to $500,000. Thankfully, we were well insured. We’re incredibly thankful that things turned out well for us and for Cedar, and our hearts continue to go out to those whose stories don’t have such happy endings.