Chapter 18

GOING HOME

Nearly three weeks after surgery, which included ten days in the ICU, and five days in Eight West, my time at Mount Sinai was hopefully coming to an end, so we had to develop a concrete plan for my home care. Karen was connected with a team of Irish nurses that provided this service and she was looking into it. Meanwhile, Jim had to learn to perform basic Jeannie care. One of these tasks was cleaning and changing my tracheotomy, which, as I mentioned, was sometimes a treacherous endeavor—more for the changer than the changee—because if I coughed or even exhaled too hard, let’s just say you would be safe only under a large umbrella. But Jim learned to do it, God bless him. He was calm and methodical. Not making jokes (at first), but focused and strong.

Jim is surprisingly good in medical situations. He keeps his head under difficult circumstances. When I was nine months pregnant with Marre, there was a plumber at our apartment fixing a leaky sink. Noticing the size of my “due any minute” belly, he asked me if my husband planned to be at the birth. “Of course! Why?”

“Don’t let him see it,” he warned me. “I had to leave the room when my wife gave birth. He’ll never look at you the same again.”

Jim, on the other hand, insisted on being part of all my deliveries. Sure, he got better at it with each one. With Marre, my first baby, I waited too long to go to the hospital and I was in too much pain to walk anymore. Rather than risk my having the baby on the stairs or in an ambulance, Jim called two home-birth midwives to come over and save the day. He was on standby to help. “What do I do?” Jim asked. “Boil water?”

“Warm up some towels!” said one midwife. We didn’t have a clothes dryer, so Jim turned the oven to warm and put towels in it. She also asked for plastic shower curtains. Jim came up with some plastic paint covers we had stashed somewhere. Suddenly we had a plan and I found a burst of strength to carry me through the pain. An IV bag of antibiotics (just in case) hung from an oval shower rod that was suspended above my tiny clawfoot tub where I sat in a bath of steaming water. I felt like I was fading in and out of consciousness: sharply aware of what was going on and then when the contraction pain would start going to another place where I was surrounded by blue and white light, until the peak would subside and I would return to the reality of the bathtub. The midwife suggested we take this show out to the living room where a bed of plastic and towels had been placed and she could set up her equipment in an area larger than the four-by-five-foot bathroom. The two midwives half carried me out of the bathroom into my birthing nest, where I heard my mother praying loudly behind the closed bedroom door and, from the living room, the distinct sound of duct tape ripping. We rounded the corner to find Jim, dripping in sweat, taping yards of plastic sheeting over the wall where our new forty-two-inch flat-screen TV was mounted.

“What do you think is going to happen in here?”

“My friend told me not to wear my good shoes,” Jim said. “And they told me to put plastic over anything that could get damaged.” Through all the pain I was going through, the sight of Jim taping plastic to the wall to protect his TV remains one of my fondest memories of the entire experience. That and seeing the live human being who entered the room three hours and two Sunday morning services later (I could hear the bells chiming through the epic pushing phase). There I was, holding a deliciously healthy (nine pounds) baby girl. She had a thick shock of black hair on her head (we are both blond), and her chubby face was squinched up as she cried out, taking her first breaths. She looked like the Buddha wearing a Beatles wig. Jim looked like he was the one who had just given birth. After that first experience, he became something of an expert.

Therefore, Jim was no stranger to gore. At this point he had assisted with five unmedicated home births, so learning to pull a long rod out of my throat, unscrew the cap, rinse it out, and sanitize it before sliding it back in and tying it back to the bib thing was as second nature to him as putting a microphone back in the stand.

As we prepared for my discharge from the hospital, a new nurse was walking Jim through this procedure, but he was explaining it too slowly and neglected to fasten the ties right away. Suddenly, a sneeze came over me and the metal trach ejected from my throat like a silver bullet and shot across the room, missing Jim’s gigantic head by an inch. Initially, this struck me as very funny, until a trauma team came in and there was a lot of hubbub about getting the trach back in my throat. I guess it was dangerous not to have one, even for a moment.

The day before I was supposed to leave, Jim and I were like giddy six-year-olds on the night before Christmas. The mundane medical interactions that I had become so used to were infused with happiness and excitement: “Yes, I would love nothing more than to have my vital signs taken, thank you!” We stared at the door of the room, holding hands, like we were waiting for Santa to come down the chimney. Enter a team of serious-looking doctors. Due to the incident with the tracheotomy, there had been an important debate behind closed medical doors about whether or not it was safe for me to leave the hospital as previously scheduled. “No! I’m fine, I’ll be fine, I need to go home!” I begged. I turned to Jim, who seemed crushed. There may be no presents under the tree this year.

“We will let you know tomorrow,” replied Dr. Robert Rothrock, one of my doctors, who looked like he should be on a soap opera and had a name to match. Normally, Jim and I would have laughed about the perfect Dr. Rothrock, but not today.

Anyone who has spent any time in a hospital knows that waiting for doctors to come in and give you updates is agonizing. Your day revolves around it. If you address a question to any hospital staff, the answer is likely to be, “Your doctor will come in and let you know.” The worst is when you wait all day to find out what is going on, you doze off, your caregiver runs down for a coffee, and then you miss the doctor. It’s like staying up all night and then sleeping through the sunrise, or going to India and finding out the Dalai Lama just left. The doctors hold the key to the mystery of life in these rounds of enlightenment while you lie in wait, floundering in bewilderment and ignorance.

The next morning, the doctors came in and explained that they had decided to allow me to leave, but only under the nonnegotiable condition that I be accompanied home by a registered nurse who we would have had to hire from the outside. We didn’t have one. The Irish nurse squad was unavailable. Jim reached out to one of our neighbors, a working actor who also happened to be a registered nurse, but on that fateful day, he was not around. We were at a loss.

Later, one of my sisters was taking me for my daily grandma walk to gaze down at the gift shop at a balloon or something to slightly raise my sinking spirit, when through my blurry, one good eye, I saw a nun in a full habit walking toward me. Had I died? “Excuse me,” said the nun. “Do you know where Eight West is?”

“Sister Mary?” I asked. Sister Mary, of the Sisters of Life order, was an old friend who had previously helped Jim and me through one of the more traumatic times in our life. We had known her for about ten years, and although she was now reassigned to Washington, DC, we had remained close friends through handwritten letters and monthly call days. She had become my spiritual adviser—my “nun on call.”

On April 7, 2008, when Jim and I were twenty-two weeks pregnant with our third child, I was rushed to the hospital because of cramping and bleeding. We were stunned because a couple of weeks earlier, we’d gotten the anatomical scan that assured us our baby girl was in perfect health and already almost two pounds. In the hospital, it was discovered that somehow the umbilical cord had gotten infected, and my body was going into premature labor to try to eject the infection. The baby, whom we had lovingly referred to as “Bean” since we first saw her at eight weeks, was in mortal jeopardy. I was put on a course of antibiotics and told by the neonatologist that although some babies are born at twenty-two weeks and survive, this baby did not have mature lungs or eyes yet and was on the “cusp of viability.” I had to stay pregnant and hope that the infection would clear. Since I was in the hospital, we weren’t really worried because I was surrounded by doctors and experts. Jim and I were confident that this was just a little bump in the road. Suddenly there was an extremely painful cramping sensation. Doctors rushed in and checked the baby via sonogram. I was in full-blown labor. The neonatologist sat with Jim and me and explained that the baby was coming and there was no stopping her. She would be born alive but would be unable to survive on her own. Her little lungs were just not ready. They could put her on a breathing machine to prolong the inevitable, but that would cause her a severe amount of unnecessary discomfort. Jim and I were shocked. We clung to each other, crying. What would we tell Marre and Jack? They were so excited for their new sister and were already making her cards and drawings welcoming her into the family. I was beyond devastated.

Jim took my face in his hands and looked deep into my eyes: “Jeannie, I am so, so sorry. What can I do? What can I do?” The familiar labor pains had started.

“Jim, I have already had two unmedicated births,” I said through my tears. “I can’t go through another painful labor knowing this baby is going to die. Please, go get an anesthesiologist and tell them I need every painkiller known to humankind. I do not want to feel anything.” The emotional agony was crippling. It was too much for me to bear as it was; I couldn’t go through anything physical. Jim ran out of the room to oblige me.

On the way to the anesthesia station he literally ran into a nun in an old-fashioned, full habit. This was the first encounter with Sister Mary. She was at the hospital with another nun supporting one of the pregnant women from their shelter. They were just leaving. Jim blurted out to her: “Sister! My wife is about to lose her baby! We are Catholic and it would mean so much if you helped us through this!” The nuns explained to Jim that they had been at the hospital for twelve hours and ensured him there were other people there that could support us. Jim pleaded, and Sister Mary relented. She told her colleague to leave without her, that she would stay. She entered my room like a ray of sunshine cutting through a deep fog. I looked at this nun with the white veil as if she were an angel that could save me from this horrific misery. “Sister! My baby is going to die! Please save her!” Sister Mary sat down on the bed next to Jim and took both my hands.

“Jeannie, I don’t know why God is calling your baby home, but you have to let her go.” I didn’t want to. I wanted this baby so badly. Jim had his head in his hands. His shoulders were trembling. “Jeannie and Jim, it’s your goal as parents to get your children into heaven. This one is already going.” This statement could have made me furious, but instead Jim and I were filled with an inexplicable peace. When trying to recount this feeling later, it was described to me as “grace.” Sister Mary brought out a small bottle from her bag. “This is blessed holy water from Lourdes, France. I am going to say a prayer over your baby. What’s her name?” Her name had been “Bean” up until this point, but that didn’t seem very holy. Though I found out later that there is actually a “Saint Bean.” Catholics think of everything.

“Her name is Maria. Maria Lourdes,” I just decided.

“Maria Lourdes’ short life is going to have so much meaning for you. She is your child, and you and Jim will always love her and cherish her as your dear daughter. She will always be with you.” Sister Mary’s ethereal words were cool water poured on our parched souls. A short time later, beautiful Maria Lourdes was born. She was regal and elegant. A perfect tiny baby. Jim and I spent the next several hours talking to her, singing to her, and cuddling her. After a while, she went to sleep, never to wake again. I held her warm body close. I looked over at Jim sleeping in the corner chair. I felt more love for him than ever before. To his left, the air appeared sort of misty, and then some colors began to take shape. Blue and white. The room smelled of roses. I blinked my eyes and I saw what appeared to me to be a shape like the Blessed Mother holding a seven-month-old baby girl in her arms. The baby looked at me with big round blue eyes and smiled. I shook my head. The vision was gone. These drugs were really strong. Then I remembered that the anesthesiologist had never made it into the room.

We never found out conclusively what had caused the spontaneous infection, but the expert medical staff advised us that it would be dangerous to have any more children. My body might not be able to handle pregnancy anymore. In the whirlwind year that followed, while we grieved the loss of Maria Lourdes, we became pregnant with Katie, who was born full-term and flawless the following May. On Mother’s Day. Around Christmas that year, Jim entered my room holding Katie, who looked at me with big round blue eyes and smiled. I recognized her as the baby I’d seen in my vision in the hospital. That was the miracle I was afraid to tell you before, but I thought you might be ready now.

Kidnapping a Nun

So Sister Mary was there at one of the most significant moments of our lives, and now, with her improbable appearance in the hallway, she was with us at another. Materializing seemingly out of nowhere on the eighth floor of Mount Sinai.

I vaguely remembered she was going to be in New York to visit her nephew around this time. I believe she had communicated with Jim about stopping by the hospital to pay a visit. But the moment she arrived could not have been more timely. I was down in the spiritual dumps. She helped me back to my room. I asked for her prayers and told her about how this was the one day that my neighbor happened to be unavailable, so I couldn’t leave the hospital.

“But you know, I’m a registered nurse,” said Sister Mary. Jim and I were aghast. Suddenly it made total sense that she was a nurse—all those years ago we had met her in a hospital. She was there all day taking care of pregnant women. We called the doctors and told them my registered nurse was here to escort me home. We also mentioned to Sister Mary that she’d probably have to call her nephew and postpone her personal plans because we would likely require her services for the entire day. After all, she was a “nun on call,” and we needed her. We kidnapped a nun.

Eight weeks after our fateful, frantic car ride up the FDR to Mount Sinai, Jim and I prepared to leave. I slipped on the fashionable Chloé cat-eyed sunglasses my cousin gave me and, with my husband and my nun at my sides, I rolled down the hallway of Eight West for the last time. Good-bye, random crashing noises in the middle of the night. Good-bye, incessant beeping machines. And, especially, good-bye, specter of death hovering over me. I’d had an entire pear removed from my brain, and I was ready to face whatever came next. Bring it.

When I was pushed through the exit doors into the bright sunlight and took my first breath of fresh outdoor air, I felt like a butterfly emerging from a cocoon.

Jim hoisted the oxygen tank and related tubes into the back of the SUV that he had arranged to take us, and Sister Mary, home. Traffic was horrible, but still, it seemed less tumultuous than the ICU. The horns honking and sirens blaring were music to my ears. I was heading home! My kids were waiting! I sat in the backseat growing impatient as the journey from 103rd Street and Fifth Avenue to the Lower East Side, which should have been forty minutes down the FDR at that time on a Saturday, took about two hours. How different this was from the ride up the FDR when I had no idea what was about to happen. We all sat in stunned silence. I stared out the window. There was the Pepsi-Cola sign that I’d thought I might never see again. Memories were mine. Memories are everything.

Drugstore Cowgirl

The driver took the Twenty-Third Street exit instead of Houston and I found myself annoyed. Now we are going to hit more traffic, I thought. The feeling of irritation was quickly replaced by exaltation as I realized that I was having normal traffic impatience. Normalcy! I was feeling what normal people who were not in a hospital felt! During this long drive through the city to the “no place like home” at the end of the Yellow Brick Road, I noticed there was a Mister Softee ice cream truck on every single corner. I was incredulous at the thought that in all my many years of living in New York City, I had never once gotten myself a Mister Softee cone. I had bought them for my kids so many times, but I had been that mom who never got herself one. I vowed on that day that once my “nothing by mouth” restriction was over, I would make it my life’s goal to never pass a Mister Softee without getting myself something.

Jim and Sister Mary ushered me in through the back door, which was the shortest distance to my bed, and they helped me lie down. I was exhausted by the journey, though I’d been sitting the entire time. Being home felt surreal. Our bedroom had been meticulously cleaned by someone unknown and I was impressed by the made bed and spotless surroundings. I inhaled deeply and smelled no hospital aroma, except me. I was still wearing the gown. The kids were not home from their outing yet, which was a huge disappointment, but I was also somewhat relieved because the first thing I wanted to do before they saw me was take a shower and change into some normal-looking and normal-smelling pajamas. Jim had already gotten a shower chair that I would need to sit in, and that chair remains there to this day as a monument to my freedom. Since I couldn’t walk on my own, Jim and Sister Mary got into the shower as well to set me in position so I could hose myself down in privacy. Before you think this book just took a dramatic turn in genre, there were still several places on my body that were wrapped in bandages and could not get wet. So, this “shower” was with the handheld hose only, I was partially clothed, Jim was fully clothed, and Sister Mary was in her full nun’s habit.

Though I should have been enraptured by the first sensation I’d had of actual water hitting my body in weeks, my mind was otherwise occupied with constructing the joke “a brain surgery patient, a comedian, and a nun walk into a shower…” The rest of the afternoon was spent with me watching Sister Mary and Jim struggle to put together all the in-home care machines: the IV feeding machine, the oxygen, the suction thing, and all the plastic tubes. There were so many tubes that my room looked like a mad scientist’s lab. “Miles and miles of tubes,” as Sister Mary put it. Those two would have blown George Burns and Gracie Allen off the “best comedy duos” list in a heartbeat. Jim was following Sister Mary around the room as she connected tubes. The tubes were so long she was concerned the oxygen would be too weak by the time it reached my mask. She wanted to cut them. Jim, at the ready, quickly fetched her a scissors, and they went around together through the forest of tubes.

“Okay, this one goes here and that one goes there… Now, where is the little connector thing? Oh, there it is!” Sister Mary stopped to pick up the plastic piece. Jim bumped into her.

“Whoops. Sorry, Sister!” They seemed to be tangled up in the tubing. I think Jim stepped on her habit. Even though I was short of breath, I chuckled and felt the rush of joy bring color to my cheeks. I was moments away from seeing the kids. I was home!

Playing Doctor

When the kids got back, they were instructed to take a decontamination shower before they could come in to see me. They had been prepped by a nurse about what condition to expect to see Mom in, and how they could not touch certain parts of my body. I asked Jim for details about what they had been told. He said that the nurse sat them down and gave them important information and responsibilities.

“Your mom has a little hole in her neck that she needs to help her breathe, so you might see that and think it is scary, but it is actually really helping her get better. She also can’t eat or drink like you or I can, so she has a special tube going into her stomach where she can take food, water, and medicine. She’s only going to have these things for a little while, but during the time she does, you have to be really careful around her. She’s going to want to get hugs and kisses, but you must be gentle around these areas.”

Michael raised his hand. “Can we sleep in the bed with her?” The nurse said that wouldn’t be the best idea for now, because when people are sleeping they can’t be as careful and they could accidentally pull the tube out. “If the tube gets pulled out, will all the air go out of her like a balloon?”

This is the post on Instagram that announced to the world that I had come home.

Being (sort of) careful around Mom.

I heard the familiar noises of the kids and my heart pounded in anticipation. When they entered the room, I was reborn. They stood awkwardly for a beat in front of my bed, allowing a moment for us to take one another in. They were a feast to my eyes. My seven-year-old, Katie, was like Florence Nightingale. She was concerned about my temperature, my comfort, and if it was time for my medicine. My four-and five-year-olds, Patrick and Michael, were carrying toy doctor’s kits, and they carefully used their plastic instruments to analyze my condition.

They brought in gigantic, shiny, individual balloons that spelled out “WE LOVE U!” and put them in front of my bed.

There were stacks and stacks of cards from friends, and more drawings and love that expressed joy, gratitude, relief, and well-wishes.

I was back. Not as the boss, not as the organizer, not as the house-runner, but I didn’t care. I was surrounded by love and family and I felt I had finally turned a corner.

I was under a pile of kids.

And that’s when the real work started.