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Excerpts from

Equal to the Task: One Family's Journey Through Premature Birth

P r e f a c e

 

THIS BOOK HAS A HAPPY ENDING. I feel compelled to say this because the books I read about premature babies during my son’s stay in the NICU at East Tennessee Children’s Hospital ended in tragedy. I know a writer is not supposed to give away the ending to the book, but I do not want you to be so scared that you do not finish reading this one.

My wife Nicki was admitted to Fort Sanders Regional Medical Center on February 17, 1999. We learned that our unborn son, Benjamin, was experiencing heart failure due to a medical condition called supra ventricular tachycardia (SVT). The doctors did everything they could to treat Nicki, but labor started on February 25 and at 9:50 a.m., Benjamin was born — two and a half months prematurely.

Benjamin was taken from Fort Sanders Regional Medical Center to the East Tennessee Children’s Hospital in Knoxville, Tennessee. For the next two and a half months, Benjamin was a patient and Nicki and I, and our parents, were quasi-residents.

During our time in the NICU, I read everything I could find about premature births, which wasn’t much. During the long nights when I sat on a stool next to my son’s isolette, I asked the doctors and nurses countless questions. I think my habit of taking copious notes was obvious to the nurses because after a couple weeks one of them told me I was taking down so much information that I should write a book. I decided she was right. And now you hold in your hand the finished product.

The fact that you have chosen to pick up this text probably means that you or someone you know has just had a child born prematurely. Or maybe you are an expectant parent who has heard horror stories about what can happen if your child comes early.

The most reassuring statistic that I was given during our stay at the hospital was that over 97% of all premature babies that make it to a NICU ultimately go home. Considering how sick many of these children are, this is an amazing number. But it also says that the odds are that your baby is going to be all right.

In my short time as a father, I have learned that babies are tough. They are a lot more resilient than their moms and dads! When Benjamin was born, and I became a regular visitor at the NICU, fear was my constant companion. Every time the telephone rang I was afraid that it delivered bad news from the hospital. Every time I entered the nursery and walked back to Benjamin’s crib, I was afraid that he had taken a turn for the worse. And I was afraid, perhaps most of all, that I was not man enough to handle a child that was different — a child that was not like the ones that the nurses refer to as "Gerber babies."

I think we fear most what we don’t understand. The lack of information, and education, about premature birth is frightening. I remember some of the questions I had:

How long will Benjamin be in the NICU?

What do all the machines do?

What does it mean to go home with a monitor?

Why are all the signs up about A’s and B’s?

Will my baby be normal?

What is normal?

Nicki and I got through our ordeal because of the interest and attention to detail displayed by our doctors and nurses. Support groups developed naturally among the staff and other parents in the NICU.

Since Benjamin has come home, I have encountered at least twenty people who had babies that spent some time in an NICU. Since all of them asked essentially the same questions, I thought it would be a good idea to share my experiences as a father of a premature baby.

I kept a diary about each day’s events. In it are the highs, and lows, that come with any extended hospital stay. I have tried to be as detailed as possible, but still make this book a "good read"— my apologies if the book seems cathartic, but I could not separate what I was feeling from the facts.

If my experiences had to be summarized in one sentence, it would be: "Do not be afraid to hope for miracles." Everyday that Benjamin was in the hospital, my eyes were opened to what life is really all about. The daily struggle offered any number of successes and failures.

I hope you find the information helpful. More importantly, I hope you share it with someone else. Whether you will be in the hospital for a few days, a few weeks, or even months, you will not be able to get through it alone. Part of being a family is "circling the wagons" during times of crisis.

A few years ago, a good friend and his ten-year-old son were killed in a tragic accident. My friend was a minister at a local church. His father, who was also a minister, spoke at the funeral. Through all the tears, I remember the words said by my friend’s father as a eulogy: "This too shall pass." I believe that God does not give us any burden that is too great for us to carry.

Times of sorrow will be replaced by times of joy. And like every other struggle, "lo’ there shall be an ending."

FREE FALL

F E B R U A R Y 1 7

HEART FAILURE. Benjamin was dying. Nicki was in the thirtieth week of her pregnancy and our world had just stopped. Benjamin was going to be our first child. Up until now, Nicki’s pregnancy has been textbook. Our appointment today was for a routine checkup that had been scheduled for several weeks. We had no reason to suspect anything was wrong.

Usually we waited for the doctor in one of two brightly decorated rooms that had Winnie the Pooh characters wrapped around the feet of the table stirrups. Today, however, we were taken to a tiny corner room with no windows. Other than a couple of charts and an examination table, the room was almost empty. A chair had to be brought in for me so that I would have a place to sit down. In the corner there was an old ultrasound machine, the kind that had levers, like you find on an equalizer.

After a few minutes I became bored and started playing with the controls on the ultrasound. I moved the levers up and down so that they looked like a staircase. Nicki told me to leave them alone, but if I was going to have to wait, I needed something to occupy my time. Besides, we weren’t scheduled for an ultrasound.

When Dr. Newton came in she was all business. This was unusual because Dr. Newton doesn’t act like a doctor. She is usually warm and relaxed, like a favorite aunt telling you about her latest vacation trip.

Nicki had picked Dr. Newton as her OB because she made pregnancy an event. Dr. Newton is a tiny woman — she can’t weigh more than 100 pounds — and her personality is charmingly understated. We never felt rushed, and although she must deal with hundreds of pregnancies each month, we always left with the feeling that our baby was the most important baby in the world.

I knew something was wrong before the doctor said anything. When she listened for Benjamin’s heartbeat, it was as if a shadow passed slowly across her face. She hooked Nicki up to the ultrasound. My face must have flushed when Dr. Newton commented that someone had fiddled with the settings, but I was too ashamed to say anything and chose to remain silent.

Nicki shot me the "gotcha" glance while stifling a grin. Nicki still didn’t suspect that something was wrong. As soon as Benjamin’s image appeared on the screen, Dr. Newton told us that he was in trouble. Fluid had built up in his abdomen. She said this was consistent with "hydrops," a medical term for extra fluid or swelling. It causes heart failure in unborn babies.

I was frozen by her words. Benjamin’s heart was beating faster than 250 beats per minute, and it was also irregular. Dr. Newton told us that his condition was life threatening. When she left the room to schedule an emergency appointment with a specialist, Dr. Perry Roussis, Nicki fell into my arms. There was nothing we could do, no one we could to talk to, so we just held on to each other and waited for the doctor to return.

Later, I asked Dr. Newton what she was thinking about when she told us that Benjamin was dying. She said, "I focused on what I could do to help your baby quickly and how I could tell you about this dangerous situation with the least possible alarm." When I asked her why, she replied, "My impression of any pregnancy complication is that the thing moms and dads need most is information."

She was right. I wanted information so desperately that I did not even know how to ask the questions.When Dr. Newton told us that Benjamin could not survive much longer without immediate treatment, I withdrew. My questions were replaced with silence. I was overwhelmed at the thought of losing Benjamin. I felt smothered. I had to force myself to breathe.

I wanted Dr. Newton to say that everything was okay. I wanted to shut my eyes, to close out everything that was happening, to go back to what it was like yesterday — when the only thing I had to worry about was getting the nursery ready.

After a moment, I realized that Dr. Newton wasn’t saying anything. When I became aware of the silence, I became even more uneasy. What was I supposed to say? Should I ask questions? Do I want to know? Not knowing leaves room for the lies we tell ourselves when we need something to hold onto. Right now I had nothing.

As I gathered myself, I asked Dr. Newton how she had known that something was wrong. She said that the most important thing she did as a doctor was to listen to her patient.

Women develop a "sixth sense" during pregnancy, and when she hears words like "I just don’t feel good" or "I’m worried," she and her staff are red flagged that there might be a problem. So when Nurse Gale did the intake part of Nicki’s appointment, she heard, or sensed, something when she asked Nicki how she was doing. Because of what Nicki said, the nurse put us in the ultrasound room.

More silence. I didn’t want to hear anything else. My stomach felt like someone was squeezing it. I felt like I was on an elevator that was dropping too fast. All I wanted to do was leave. I wanted to go to the specialist right then. I wanted another ultrasound.

I wanted Benjamin not to die. When Dr. Newton said that there was nothing more that could be done until tomorrow, my heart fell. People don’t die just between the hours of nine to five. Benjamin needed — I needed —something to be done now. But that’s not how it works.

Would Benjamin make it through the night? Why do we have to wait until tomorrow to go to the hospital? Is he going to die? I could not ask these questions either. So an appointment was made with Dr. Roussis for early the next morning. We were told to pack some clothes because Nicki would be admitted to the hospital. The nurse gave Nicki a hug and we walked down the corridor toward the exit from the office. I locked eyes with Dr. Newton as we went past her. With that one look, she answered all of my questions. Benjamin was in trouble and I was about to endure the darkest night of my life.

F E B R U A R Y 2 5

I HAD JUST MANAGED to doze off when Nicki called out to me from the bathroom. I went to her and she started crying. She said that her water had broken and told me to go get a nurse. Nicki has been a gladiator. Although she has been in labor for more than a week, she was determined that our child would live. She suffered through the medicines, the tests, and the uncertainty, without ever losing sight of the goal. No quarter was asked — none was given.

I have been a coach for almost all of my adult life. I coach volleyball and basketball at Anderson County High School. The hardest thing to teach an athlete is that there is no shame in losing when you have given your best. Championships go to only a select few, but that does not mean that the others who ran the race or played the game have failed. I tried to tell Nicki that we were here, and Benjamin had his chance, because of her. She was inconsolable.

As Nicki was taken back downstairs to the delivery room, I was given the responsibility of calling the appropriate family members. Nicki was given an injection of a drug called Stadol and she began a long ride on the mood swing roller coaster. She went from chatty giddiness to unrelenting anger caused by the release of pent-up frustration. In no uncertain terms, Nicki told her mother and me that it was time for the epidural.

I do not know how a starving animal would react if you tried to pull food from its mouth, but it cannot be any less fierce than a pregnant woman about to give birth who wants pain medication. Judy and I tried to convince Nicki that we were not part of a vast conspiracy to keep the pain medicine from her.

By 8:00 that morning, everyone had arrived, meaning all of the grandparents, my sister, and our close friends. At 8:30 we were told that we should expect Benjamin’s arrival to be between 12:00 and 1:00. I was exhausted. I tried to grab a quick nap so that I would have the energy to get through the birth.

I had just closed my eyes when Nicki told me she was feeling some pressure. At that moment everything exploded. Dr. Roussis came into the room and scrubbed as he yelled out instructions to the nurses who were putting up lights and pulling machines from locked cabinets that I had never seen opened. One of them made a call to Children’s Hospital to have a neonatologist present. I experienced my first birth.

Growing up, I never had a cat, so I never saw kittens being born. For that matter, I have never seen anything born. Whenever a birth occurred on television, I either left the room or changed the channel. I don’t even like to talk about female hygiene. I would prefer to remain ignorant about the entire process. To say that I was reluctant to be a participant in Benjamin’s birth would be an understatement.

I couldn’t bring myself to look beyond the sheet. In fact, I passed out. I was holding Nicki’s hand and the next thing I remember was waking up as a nurse placed a cold compress on the back of my neck. I spent the next few minutes with my eyes staring at the floor, holding Nicki’s hand telling her that she was doing great.

Nicki had given me a book to read which detailed everything that occurred during childbirth. I meant to read it, but had kept putting it off. I thought I had more time. With everything that was happening, I felt like a rabbit caught in the headlights of a speeding truck. Like the rabbits in Watership Down, I went "tharn." Why didn’t I read that stupid book! Dr. Roussis kept me involved with stories about Greece and the fact that Nicki stood for victory and was where the word "Nike" came from. The highlight was when he told me that he had delivered Rick Pitino’s baby. For the average person, this might not mean anything, but to me the Boston Celtics are almost synonymous with religion. I have seats from the Boston Garden in my office and autographed pictures from every Celtic since Cousey. I did not think that this man could rise any higher in stature until he mentioned that he had been entrusted with the birth of baby Pitino.

It is impossible to put into words what goes on in a delivery room. I would be lying if I said I enjoyed it or that I recommended it. The event is overwhelming.

At 9:50 that morning Benjamin was born. As soon as Dr. Roussis pulled him out, he held him up for us to see. Nicki was not wearing her glasses and as her mother reached across the table, she knocked them onto the floor. This elicited a curse word from Judy. That was probably the first thing that Benjamin heard.

Dr. Roussis handed Benjamin over to Dr.Nalle, the neonatologist, who had brought an isolette with him from Children’s Hospital. Before Benjamin was taken to Children’s Hospital, Nicki and I were allowed to put our hands through the openings in the glass and touch our son for the first time. He is beautiful.

One of the nurses had a Polaroid™ camera and began shooting pictures. I put my index finger through the opening into his bed. He grabbed hold of it. His eyes were not open, and I don’t even know if he knew that I was his father, but for the first time in my life I touched someone who is part of me.

When I was an infant, Mom and Pop adopted me. Mom used to tell me that I was more special than any other baby in the world because she and Pop got to pick me out while all of the other parents had to take what they got. I could not have had better parents. Although I rarely think about being adopted, when my sister Ann’s son was born, it left me with an odd feeling. Ann was also adopted and seeing someone that looked like her made me feel empty.

My Mom and Pop were the perfect parents, and I would not trade them for any others. The people who gave birth to me have no place in my life. I have no desire to ever meet them or to know anything about them. The only parents that I have, or that I will ever have, are Bill and Sarah Cantrell. Still, touching Benjamin’s hand was magical.

As the oxygen in the isolette began to run low, Benjamin was taken over to Children’s Hospital with the friends and grandparents in tow. This left Nicki and me alone for the first time in more than a week. I crawled up onto the bed with her and we held each other, laughing and praying.

That night I refused to go see Benjamin until Nicki could come with me. It was then that we got our first long look. Benjamin is in a little plastic oxygen hood. It looks like a cake plate to me. It sits over his head. Other than that, he is perfect.

All of the grandparents got to come in, and Kay and George, longtime friends, slipped in under the pretext of being grandparents. They were the first non-family members to see Benjamin. They took his picture to put on the Internet. Everything that happened during the past week was forgotten.

Benjamin is alive. So am I. Standing by his crib, actually seeing him in the flesh, not his outline, is like looking at a sunrise. I feel like I can start to live again. I want to cry and laugh at the same time. It is what I had imagined it was supposed to be like, only better.

We couldn’t hold him yet. That would come later. His heart is beating like a baby’s heart is supposed to beat. He is still and his eyes are closed, but I could see him breathe.

The nurse said that we shouldn’t touch him — too much. We held his leg and his hand. His little face is red and scrunched up. His hair is dark like Nicki’s. His fingers are so small, but his hands are huge. They look like gloves. He could palm a tennis ball. Benjamin is now my son. He always was mine, but it’s different when he’s in a crib instead of inside Nicki. This is the greatest day of my life. It’s cliché to say, but it’s true. I went to bed that night and actually slept.

TERROR

IN THE NIGHT

M A R C H 5

 

I HAVE ONE OF THOSE DIGITAL CLOCKS with great big numbers — the kind that was popular in the 1980s — no radio, no alarm, just a clock. I paid a dollar for it when I worked at the Radio Shack during college. I’ve kept it because it was cheap and I like it. I sleep so lightly that I don’t need an alarm. The telephone rang at 5:50 in the morning.

When I wake up in the middle of the night, the first thing I do is look at the clock. Since Benjamin has been in the hospital I have gotten into the habit of leaving a cordless telephone on the nightstand beside our bed. Things have been going so well that when the telephone rang, it both startled and terrified me at the same time.

It rang only once before I hit the button. I knew it was someone from the hospital even before I heard the doctor’s voice. I also knew it was bad. I wanted it to be a crank call — a wrong number — anyone but someone from the hospital.

Our house was completely dark except for the red illumination of the clock and the light from the handset that came on when I pressed the talk button. I got that feeling you get when you are driving and you barely avoid an accident — that tingly feeling that starts just below your neck when you realize what just happened. Terror hit me hard. Please don’t let it be a call from the hospital.

I answered before the second ring stopped. I could hear the panic in my own voice. As soon as Dr. Howick spoke, I felt my stomach being ripped out. Doctors can deliver bad news, at inopportune times, in deliberate fashion. Although he and I had never met, he assumed, correctly, that I would know who he was. He did not waste any time on identification or an apology for calling at that hour, but simply said his name and that Benjamin had gotten sick during the night and had been intubated. I didn’t realize that this meant a breathing tube had been inserted down his throat.

Although I make my living asking questions, and feel no intimidation around doctors, my mind was a total blank. I did not think to ask what had caused Benjamin to be sick or even what type of sickness he had. All I could think of was "please don’t die."

Dr. Howick never said that Benjamin could die, but that’s what I heard. Over the last two weeks I had conditioned myself for Benjamin’s death. This call was just confirmation of my fears. I did not ask any questions because the answers were already known to me.

After I hung up, I immediately regretted that the telephone was on my side of the bed because Nicki did not suffer from the same affliction that had rendered me incapable of talking. Within the time that it took for me to hang up and roll toward her, she fired off at least ten questions, all of which were appropriate and none of which I could answer. So I lied.

I suppose it is bad to admit that you would lie to your wife at such a critical time. But I was rattled by the call and embarrassed by my inability to handle the conversation with the doctor.

I tried to do what I felt was best, so I told Nicki that Benjamin was sick and that we needed to go to the hospital later that morning. I embellished the conversation by adding that there was no need to come immediately, omitting the reason — which was that visitors were not allowed into the NICU until 8:30 a.m.

We lay in bed, but there was absolutely no way to sleep. I couldn’t even shut my eyes. I stayed completely still. I didn’t even disturb the sheets. Maybe if I didn’t move, it would be OK. I tried to hide in the morning darkness — to escape what was happening.

We got up around 7:30 a.m. As we showered and prepared to leave, we called our respective parents. The trip to the hospital was made in silence. Nicki and I didn’t say a word to each other during the drive or on the way up to the Fifth Floor because neither one of us wanted to confront the fact that something terrible was happening. We were still getting used to the idea that we had a son. If being in shock means not having the ability to speak, feeling totally withdrawn, and having the full body tingles, then I was in shock.

As we stepped off of the elevator at the NICU, the blinds to the unit had not yet been opened. We were the only people in the hallway. We walked in through the door that leads to the intercom and hit the button. After we identified ourselves, we were buzzed back. We scrubbed quickly and walked toward where Benjamin had been the night before.

As we turned the corner, the first thing I saw was Nicki’s mother sitting by the last of the twelve critical care cribs with her head in her hands — crying. I did not see the doctor or the nurses. All I could see was Judy and that Benjamin was now in the crib where Emily had been when she died.

It was only about twenty feet from where we were to the crib, but it might as well have been a mile. As we walked, a gentleman in a suit and tie met us halfway there. He identified himself as being a chaplain. He told me that Benjamin was not doing well and he asked to say a prayer.

I am a Christian and my faith is important. I look to God and the Church for guidance concerning even minor problems, let alone a major crisis. Nicki and I knew nothing about Benjamin’s condition, except that his grandmother was crying her eyes out at his bedside. My immediate reaction was to say, "Back away, Bible Man — let’s give the doctors a chance to work!" Before we resorted to praying, I wanted to give medicine a chance. But for the fact that he was shielding himself with the Inspired Word of our God, I probably would have hit him — hard. Instead, I stopped and prayed with him while Nicki went on to Benjamin’s bedside.

The chaplain did not even know my son’s name. He offered a fairly generic prayer for Benjamin’s life — the whole time I kept thinking, "Why am I standing here with this man who has just turned my panic meter past ten to the mythical eleven?"

Nicki does not suffer from the guilt that comes from a Southern Baptist upbringing, so she totally disregarded Bible Man and sought out the doctor. By the time I arrived, she was well into a discussion with Dr. Buchheit, the neonatologist responsible for the critical care babies.

During the night Benjamin had been stricken by some sort of an infection and they were struggling to keep him alive. Benjamin’s eyes were closed and he had a tube down his throat to help him breathe. His body was a tangle of wires and monitors.

Sometime during the next half hour, a nurse explained to us what all of the i.v.’s and tubes were for and that the important thing now was to determine the cause of the infection. Nicki and I sat with Benjamin and we both began to cry. We didn’t talk — she just placed her hand against his chest while it rose and fell with the rhythm of the machines. I put a hand over my face to cover the tears.

I am not a crier. I can count on one hand the number of times that I have cried in my life —I especially don’t cry in public. I don’t believe there is such a thing as a "good" cry. But here I was sitting in a room beside my son and my wife — with everyone looking at me — crying. Dr. Prinz, the senior partner of the group that oversees the NICU, came over behind Nicki and me and hugged us both. He offered no encouragement, just a hug. As soon as I felt his embrace, I started to shake. Tears flooded from my eyes. I felt such pain, but I couldn’t let it out fast enough. I lost my breath.

About 9:00 that morning the blinds to the big observation window were opened. Several members of our family had assembled outside. I couldn’t look at them. I didn’t want them to see me crying. I didn’t want them to see me at all. If they asked me questions, I would have to tell them what was happening.

I didn’t know if I could say the words. So I looked down — not at Benjamin or at Nicki — just down. I covered my eyes with my hands and tried to block everything out — tried to hide.

Nicki wanted me to come with her to tell the family what was happening, but I wouldn’t go. I pulled away when she took my hand. All I could say was "you go." I couldn’t even watch her as she walked away. While she was gone, I sat by Benjamin’s crib. Until then, Nicki and I had always visited Benjamin together. This was the first time that he and I had ever been alone. I did not know what to do so I told him about his name and why we had chosen to call him Benjamin. I collect comic books. Mom got me started when I was little. When I was a child, she and Pop would take my sister Ann and me to the store. We each got a quarter. Ann bought candy and I bought comic books. I still buy them — by the hundreds.

By the time I was six years old, I was hooked. I would read them carefully and then stack them neatly in rows by titles — Spider-Man, Daredevil, and The Avengers. I saved my money and bought as many as I could. I took my clothes out of the chest in my bedroom so I would have a place to store them. My favorite comic book was the Fantastic Four and my favorite character was Benjamin Grimm, the Thing.

The Fantastic Four were Marvel Comics’ first superheroes. Benjamin Grimm had super-human strength, but he was also turned into an orange, rock-skinned monster. I loved him!

People were afraid of him because he was so ugly, but he had a big heart. He also had an indomitable spirit and a curmudgeon’s sense of humor. He was the bravest and most loyal of all of the heroes — always the first to sacrifice himself for the good of the group — and he never gave up.

We spent months trying to come up with a name. I wanted Robert, my grandfather’s name, but Nicki refused to have a child named Bob. My second choice was Atticus — after my literary idol Atticus Finch from To Kill a Mocking Bird. Sebastian, Samuel, and Samson were all shot down. Nicki liked yuppie names like Carter, Aaron, or Brett. We couldn’t agree on anything.

Finally, after five months, I told her that I had been holding back a name I loved — Benjamin. She said Benjamin was perfect. So that is what I told Benjamin — his name is the same as my favorite comic book character. I paid a lot of money for a copy of Fantastic Four 1 so that Benjamin could have it as a keepsake from me to him.

I also told him about myself and about Nicki. I told Benjamin about our love of movies and Star Trek. I talked about sports and how he had to get better so that he and I could go over to my Pop’s house and watch baseball games and Tennessee football. I told him that I would teach him how to play basketball and how to fish. I told him about our dog — his dog now —J.R., our Jack Russell Terrier.

After I told Benjamin everything I could think to tell him, everything I wanted to tell him in case he died, I didn’t want it to be quiet. I wanted to give him something to hold onto, a reason to live. For some reason, I decided to sing.

I am not a singer. Most of my friends and family will tell you that not only can I not carry a tune, I cannot even pick one up. I don’t even sound good to myself when I sing. Someone has even given me a poster that reads "Make a joyful noise unto the Lord, even if you’re a little off key." But as bad as I am, I know a lot of songs. On this morning, at this time, the song I chose to sing was He Stopped Loving Her Today by George Jones. It’s my favorite song. I sang it through ten straight times.

I would have kept on singing except that Dr. Buchheit came over to me and asked me if I had any questions. Feeling the need to be strong, I told him that I could handle bad news and that I wanted him to give it to me straight. My exact words were that I did not want him to sugarcoat it, but to tell me exactly how bad it was. Without blinking an eye, he said that I should start preparing myself because Benjamin could die. I quickly realized that I needed this information sugarcoated and that I could not handle it. I also realized that I did not like Dr. Buchheit. He asked if I had any other questions. I did not.

From the other side of the window, Nicki saw Dr. Buchheit come up to me so she raced back in, as soon as she could scrubin, to find out what he had said. For the second time within a three-hour span, I lied to my wife. I told her that Dr. Buchheit had just repeated what he told her earlier that morning. Part of me died during the next two hours. It began when my friend Ashley came back to Benjamin’s crib. The NICU is parent friendly, with two exceptions. Only parents and grandparents are allowed to come in to visit and under no circumstances are more than two people allowed at one time. Ashley was neither a parent nor a grandparent, and even though I was in a semi-catatonic state, I was able to figure out that he, Nicki, and I totaled three, not two.

I automatically assumed that this meant that Benjamin was as good as dead and that they were relaxing the rules so that Ashley could see Benjamin while he was still alive. As soon as Ashley came, I started crying again. To make matters worse, Ashley was followed by a steady procession of visitors, including my sister, another friend, Matt, and Chris, our pastor. Leigh Ann was our nurse. She never left Benjamin’s side. As the day progressed, his condition deteriorated. At shift change, Andrea replaced her. By this time, Nicki and I had been at the hospital for almost sixteen hours. I felt that the best thing for her to do was to go home. She was still recovering from the trauma of Benjamin’s delivery. The only way Nicki would agree to leave was if I promised to spend the night at Benjamin’s bedside. In an attempt to make up for what had been a horrible husband day, I agreed. That was a mistake.

Nicki left the hospital at about 11:30. She called me when she got home and I promised again that I would call her if anything happened. This was my third lie of the day. At 2:00 in the morning, Benjamin crashed. Although parents are allowed to stay all night, no one else but me had stayed past midnight. By 12:30 a.m., even the doctor who is on call had gone to bed. Except for the nurses, I was the only other person in the room. The room still seemed brightly lit because the lights in the nursery are never turned completely off — they are only dimmed.

My medical experience is limited to what I have learned from ER. When Benjamin crashed, it was just like it is on television. All of the bells and the monitors went off and within seconds four nurses and a doctor were working on him. I was standing off to the side, watching everything happen. When one of the nurses saw me, she politely, but firmly, kicked me out of the NICU. For the next hour I waited in the hallway not knowing if Benjamin was alive or dead. Finally, Andrea came to get me. Benjamin was on full life support.

A P R I L  1

 

BENJAMIN WILL GET TO COME HOME this weekend!

This is going to be my April Fool’s Day joke. I am going to tell everyone who asks me how Benjamin is doing that the doctors are so impressed with his progress that they are going to release him sometime over the weekend.

Sal shuttled me to the hospital late in the afternoon. Nicki and her mom had already left for the day, so I got to spend some time alone with Benjamin before dinner. While I was there, Nicki called to check in and I pretended to be a nurse and took the call. When Nicki asked how everything was going, I attempted my best accent and said that he was doing great and that his release orders were being signed. The nurses and staff who were within earshot thought I was hilarious. Nicki was not amused.

Our nurse today is Esther. Although Esther is married to an Irishman, she was raised in Panama. Esther is one of the best liked nurses in the NICU. She is Nicki’s favorite daytime nurse.

I am much closer to the nighttime nurses because I am only able to visit briefly during the late afternoon after work. My daytime visits usually consist of scrubbing in, reading the chart, and getting the quick rundown of the day’s activities before visiting hours are over. Thanks to Sal, I arrived at the hospital early today and settled in for a fairly long visit. Esther and Nicki became friends when Esther put robot sheets on Benjamin’s bed. She told Nicki that since Benjamin was such a bright little boy, he needed to have robots on his sheets rather than regular hospital sheets.

Esther is responsible for all of the decorations in the nursery. For St. Patrick’s Day, she put a clover at the top of each babies’ crib with their name on it and hung leprechauns and green all throughout the nursery. Now that the Easter season is approaching, the clovers have been replaced with Easter eggs. Paper bunnies and chicks are everywhere.

It’s hard to believe that it’s already April. I would have forgotten the month change except that Jayme, who works with me, celebrates her birthday on April Fool’s Day. When Benjamin was born, I thought that he would already be home by now.

Instead, two times during the last six weeks I have had to prepare myself for the possibility that he would die. I cannot stand the thought of having to go through that again.

Nicki refuses to talk about Benjamin dying. Before he was born, before I held him, before I had seen anything except his outline on an ultrasound, Nicki would not allow us to even consider the possibility that Benjamin could die. Her mother and I spoke briefly about how Nicki would handle losing a child, but neither one of us dared bring up the subject with Nicki because those thoughts, or words, were not allowed. Nicki’s child would not die.

Sitting at his bedside, watching him sleep, I think about his mother and how she, as much as the doctors or the nurses, is responsible for Benjamin’s survival. What we are going through is hard, but it would be much harder to lose him.

Benjamin’s head is turned slightly toward me. He has to lie on his back because of the tubes and wires. The nurses turn his head to the right and left periodically trying to make him more comfortable.

Benjamin looks so much like Nicki. Watching him makes me think about all the times, early in the morning, when I have watched her as she slept — before she wakes. Benjamin has that same look. His eyes push out against his eyelids and his lashes are long and curved. His upper lip is full with a pronounced cleft just under the nose. Just like Nicki, his cheekbones are high.

I think that he is going to have my mouth, but he definitely has Nicki’s eyes. I can’t tell yet about his ears. A truly beautiful person has perfect ears, and if they don’t, then they’re not beautiful. You can’t hide ugly ears. Big ears, or ears that stick out perpendicular to a person’s head, immediately draw your attention. Even worse are long ears, or ears that are scaly, or ears with a lot of hair growing out of them. Whenever

I talk to someone, my eyes are drawn to their ears. Most of the time, hair or a hat cannot hide ugly ears and there is no makeup that will cover them. Beautiful ears go unnoticed. They blend in with the profile so perfectly that they become invisible, just like a great referee disappears within a game.

Benjamin’s ears must be perfect because no one ever mentions them. Today is the first time that I have ever allowed myself to study them. I know that there is a certain amount of prejudice that goes with being a father, but I feel that he is truly a beautiful child. Angelic. Just like his mother.

Halfway through my visit, my parents stopped by. Mom came in to see Benjamin while Pop waited in the lounge. Benjamin is their second grandchild. My sister’s son Adam is their first. I have not been doing a good job of keeping them informed about Benjamin’s progress. While we were sitting by his crib, Mom placed her hand on Benjamin’s chest like she had seen Nicki do. Benjamin reached up with his right hand and grasped her finger. Mom tested his grip by gently raising her finger up and down while Benjamin held on. As I grew to adulthood, I lost count of the times that I have held onto my mother for strength.

Mom was diagnosed with cancer when I was in the seventh grade. The prognosis was not good. Ann and I were not allowed to go to the hospital to visit her because we were too young. Before her surgery, Mom sat Ann and me down on the couch. She told us that she had cancer and that she was going to need surgery. I did not know anything about cancer except that John Wayne died when he got it.

On the day of the surgery, my aunts came and stayed with Ann and me while Pop was at the hospital. I remember my Aunt Margie answering the telephone when Pop called to give her the results of the surgery — and to tell her that the tumor was malignant. Aunt Margie started crying while she was still talking on the telephone.

I got up and ran to my room, not wanting to listen as my aunts discussed the information between each other like Ann and I weren’t supposed to know what was happening. But she was our mother! So I ran from the room because it terrified me to see them cry. Adults only cry about death. They can take pain or not getting their way, but death always brings tears — even when it is expected.

I locked the door and started to clean my room. I made my bed and straightened my closet until everything was arranged — perfectly — totally symmetrical. I even picked up the small white specks that the vacuum cleaner doesn’t pick up. Then I turned off the lights and sat between the wall and my bed. I could not imagine living without my mother. She was my best friend. She taught me how to read and she shared with me her love of movies. She took me to ball practice and listened to my dreams.

We lived in the country and were surrounded by farmer’s fields, cows, and woods. Our neighbors were all elderly. My Mammaw lived right next door. The only time I was around kids other than my sister was at church or school. Mom provided the entertainment at home. She was the pitcher in our kickball games, the rebounder when I practiced basketball, and the undisputed champion in Ping-Pong and dodge ball.

My thirteenth birthday came while she was still in the hospital. Pop bought me a birthday cake, but I refused to celebrate until Mom came home. I made them put the cake in the freezer.

I would not co me out of my room when I was at home because I did not want to hear what the grown-ups were talking about. I didn’t want to face the possibility of losing my mother.

During that time, sleep was my escape. I slept so soundly that I didn’t disturb the sheets. The day that Mom came home, I took the cake from the freezer and let it thaw. I told Mom that her being home was the best birthday present that I had ever gotten. Looking back, that was the best cake I ever ate.

Everything that is happening to Benjamin reminds me of when my mother had cancer. I am having so much difficulty dealing with the thought that Benjamin could die that I find myself shutting down.

Looking at Benjamin hold onto Mom’s finger makes me realize that the only thing that I have done for these past six weeks is hold onto anything I could — good news from the doctors and nurses — hope. I am afraid to let go because I do not know how far I would fall.

Benjamin is holding on, too. He is holding onto life. He gets his strength from his mother, just like I got strength from mine. It has to be hard on Nicki because not only is she carrying Benjamin, she is carrying me. I recalled today a Bible verse that a friend shared with me a couple of years ago:

Trust in the Lord thy God with all thine heart

and lean not unto thine own understanding.

Proverbs 3:5

That’s all I can do. Trust and wait.

 

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