Gregory’s Story

Chapter 1

At my appointment two weeks before Christmas, Dr. Van Elswyck announced that I was three centimeters dilated and he wanted me on complete bed rest as my due date of January 30th was still six weeks away. “Bed rest – what does that mean,” I asked.” It means you rest, “he replied.” I don’t rest. I don’t know how to rest. I’ve never tried it. And any way it is two weeks before Christmas, I have cookies to bake. I always bake 100 dozen cookies at Christmas.” “You must mean 100 cookies – 100 dozen is over 1,000.” He replied “Yes, I know and I always bake them and give them away.”I told him. “Well not this year.” he commanded -I certainly didn’t want to risk delivering too soon, so I had no choice but to try this thing called bed rest.

I got a needlework kit of teddy bears climbing on a giraffe which I would hang in the baby’s room when done. It took eight hours to do a small section. I decided it was the perfect way to fill six weeks. At my appointment in early January, I asked the nurse. “I’m just wondering -this is a big practice, how many babies have died.” “Why would you even ask such a question,” she replied. I was just wondering.

January 30th came and went, and my needlework project was completed and proudly hung in the nursery. “Okay, I am ready to deliver,” I told Dr. Van Elswyck.”We will induce your labor if you have not delivered within three weeks of your due date.” They explained that they induce on Thursdays. February 11th was my birthday. “I really think the baby should have his or her own birthday, but whatever you think is best.” It was agreed that if I did not deliver by February 18th, I would be induced.

My husband and I arrived at Englewood Hospital, in Englewood, New Jersey,on February 18, 1982, and I was so ready to have this baby. We had taken the natural childbirth classes, and I was sure I could go through the entire labor without asking for any medication. I was hooked up to the petocin, and the contractions began. Several hours later the nurse announced that the monitor showed that the baby’s heart rate had gone down, and they were going to have to do a c-section. I woke up from the anesthesia and heard the nurse say “you have a baby boy, but there is something wrong with him. He is going to be taken to New York Hospital. We will bring him in so that you can see him before he is taken by helicopter.”

I was sleepy and groggy but needed to see my new son who we were naming Gregory Charles. No particular reason for the name Gregory – just liked it. Charles was my husband’s first name and his father’s first name. I kept closing my eyes and forcing them open so that I wouldn’t be asleep when they brought in my baby. This wasn’t matching my dreams of a natural delivery and being handed my baby after birth to hold and cuddle. Four long hours later, they wheeled Gregory into my room. He was in the infant transport unit. “This is your son. We have to take him now.” That was it. Thirty seconds.

When I was awake enough to understand, I was told that Gregory had an omphalocele. His liver and intestines were born outside his body. Never heard of such a thing. Apparently right after conception the organs are outside of the body, and then go inside where they belong and skin forms over them. In Gregory’s case, that step didn’t happen. New York Hospital had one of the finest neo-natal intensive care units, and he would be in the hands of one of the best pediatric surgeons in the country, Dr. Frank. I was informed that a week’s stay was required for a c-section (yes, this was in the day when hospital’s made the policies not insurance companies), and then I could go see him at New York Hospital. I begged to be allowed to leave in less a week, but my pleas fell on deaf ears.

I was told that I could call New York Hospital and speak to one of the nurses and check on his progress so that I night I called. A quiet, sweet voiced nurse, Jennifer Kellow, took my call. “Yes, I was with the doctor today when they examined him. Gregory will be here for about a month and then you can take him home.” I started SCREAMING into the phone – ‘a month – are you kidding. Haven’t you read any baby books. Do you know how important it is for a baby to bond with his mother after birth. These first few weeks are critical. He is going to have so many psychological problems. Psychological problems that are going to haunt him the rest of his life. A month. A month. A month.” Jennifer didn’t know what to do with me but then again I didn’t know what to do with me either.

The next morning I realized I had no choice but to resign myself to six more days before I was released and could start being a mother to my son. All the other moms were being brought their babies to hold, feed and play with. I realize now that the kinder thing to do would have been to move me to a medical floor so that I did not have to be surrounded by mothers and their newborns which was just breaking my heart. I asked my husband to bring me a picture of Gregory. Asked every day, but he always had an excuse. “You will see him in a few days,” and he would change the subject.

Yea! Release day came and off we went to New York Hospital. We stepped off the elevator and opened the access to N-5. Nothing in my life had prepared me for what lay behind the doors to N-5. Little, little babies hooked up to every kind of machine imaginable. I said to myself – I don’t even know which one is mine. My husband lead me to Gregory’s isolette. “What the heck is this,” I said as I saw my precious Gregory with this huge bandage on his stomach. They told me that the bandage was wrapped around his liver and intestines. Every day they took off the bandage and squeezed the bag that surrounded these two organs- much like when you roll toothpaste. They had a deadline of about thirty days before the organs had to be inside him. After thirty days,there was too great a risk for infection. They would squeeze a little each day and at the end of the thirty days, he would be sewn up and once he could drink liquids, he would be home. He wouldn’t have a belly button. “No belly button?” I repeated. We would not bea llowed to be present when the bandage was replaced.

My gaze finally went from this huge bandage on his abdomen that just about touched the top of the unit to my son’s eyes. When I looked into his eyes I said to myself “this baby knows more right this minute than I am going to know when I die.” It was one of those weird things that you feel in your spirit and then kind of shake off. I quickly was brought back to the moment at hand when I looked at his wrists. He had a small piece of white material around each wrist. A safety pin attached the material to his sheet. “What is this?” I said way too loud. They explained that they had no choice. “Gregory is so strong. He keeps pulling his feeding tube out. If we turn our back for a minute, he gives it a tug, and then we have to call a doctor to reinsert it,” volunteered one of the nurses nearby. “There has to be another way,” I was sure. “I am telling you, he has one strong grip,” the nurse continued. Well looking around at the other babies, many of which were under two pounds, I could kind of understand why she would make such a comment, but I still felt that there had to be another solution. Gregory was 6 lb. 9 oz. at birth and really did look huge compared to the preemies that were his neighbors.

He was holding a rattle in one hand and a ring of ring in the other that my husband had brought him while I was still recovering at Englewood Hospital. I didn’t know that a one week old baby could hold a rattle, but I never had a week old baby. They asked if I wanted to hold him. “Of course, but how.”A chair as put right up against the isollete. The nurse carefully scooped up Gregory and all his accompanying tubes, wrapped him in a blanket and placed him in my lap. I had to keep my back up against the chair and not move too much. They had shaved the hair off half his head for injections. It would grow back. It looked like he would be a redhead. As my mind wandered, he looked right at me and in a second, he grabbed the feeding tube, yanked it, and out it came. “I am so sorry,” I told the nurse. She just smiled. “That’s our Gregory. I’ll call for a doctor.” I knew I was going to have to keep a closer grip on those fast moving hands!

When Gregory cried, the whole hospital could hear him. He was being fed intravenously, but had the desire and need to suck. The nurses gave him a pacifier. He would suck on that pacifier like a champ. When it fell out, you knew it. “Instead of holding the rattles, could you please teach Gregory to hold onto that pacifier,” the nurses begged. When it falls out, no matter how busy we are with the other infants, he won’t stop crying until he gets it back!”

My husband and I were counting off the days to the time of the surgery when Gregory would be a month old. I spent my afternoons at the hospital holding Gregory and reading him “Green Eggs and Ham” and “The Cat in the Hat” and chatting with the nurses. My husband worked in the city and would stop by after work. I was just so happy not to be in the same situation as the other mothers who babies were really sick. Many of the infants were abandoned by mothers on drugs. A baby came in with a similar birth defect as Gregory’s – but it was his brain that was outside his skull. Three days later, his unit was empty. I couldn’t imagine what that might be like for his parents. I was just so glad that I didn’t have to go through that kind of pain. Who could do that? Not me, for sure.

One day when I arrived for my afternoon visit, I looked at Gregory, and he winked at me. That is really strange I thought. I don’t think I should tell that to anyone. They would think I was crazy. If anyone had said the same thing to me, I would think they were crazy. “Gregory, you know something I don’t know. Oh well, let me get a nurse to help get you out of that thing and into my arms.”

Surgery Day

Surgery day came at long last. They had put as much into his abdomen as they could. It was time to close him up, get him to take a bottle and get on with our lives as mom, dad and baby. They called and said the surgery had gone well. When I arrived for my afternoon visit, all that had changed. Apparently, his liver had grown larger than it would have it had grown inside his abdomen. Intestines could be cut, but this was not the case with the liver. His body was not handling the surgery. He was moved over to the section with the most critical infants. The operation had caused his kidneys to fail. He was in renal distress. Twenty four long hours later, the doctors decided that they had to undo the operation. They had no choice but to put a mesh around his organs and attempt to do dialysis on him. They had never done this kind of procedure before, but there was no other option.

The operation would last six to eight hours. It was done in the middle of the night. He may or not be alive in the morning. If he was, he was a long way from being out of the woods. How did we get here? From worrying about our son not having a belly button to not having our son. The hours passed by excruciatingly slowly. I felt like I was falling off a cliff in slow motion. The news came. He had made it through the surgery.

The next day, it was a different Gregory we visited. He had slipped into a toxic coma. His diaper was gone and a catheter with a small tube at the end was measuring his urine output. It was empty.

I went to the ladies room at N-5 and fell to my knees on the tile floor and cried out to God. “I have no right to ask anything of You. You probably don’t even know who I am. I haven’t thought about You one time in the past fifteen years. I’m sorry. I was busy. I didn’t think I needed You for anything. Gregory is an innocent child. He has never done anything wrong – unlike me. He doesn’t deserve this. You can’t let him die. You just can’t let him die. Don’t punish him for my sins. I am begging you for mercy.”

I attended the local Episcopal church with my family growing up. I wondered why women weren’t ministers. Thought I would make a pretty good one if they ever changed their rules, but as a teenager, I got a job working at the local Shop Rite slicing cold cuts. I stopped going to church because I was scheduled to work every Sunday morning. I got married to my high school sweetheart who was Catholic when he graduated from college. We solved the problem of which church to attend but not attending any. I was convinced that God was a crutch for the weak. I was a doer. I was a planner. I accomplished things. If you said move this pile of sand from here to there, I would move it shovel by shovel until the job was done. I wasn’t going to be like most people. We were going to plan our finances. Work hard when we were young and not have to worry like everyone I knew. We would wait a few years. Get financially set. Then have a baby. Working, planning, doing – that got you where you wanted to go. What did God have to do with any of that?

My mother had kept asking me to return to church. “I’m busy.” I usually replied. She told me about this young new priest. He was only four years older than me and my husband. “Whatever, mom. Thanks, but no thanks.” Fr. Allen actually had been visiting Gregory at the hospital, usually late at night. Gregory was born on his own daughter, Katie’s first birthday. He had been following Gregory’s progress through my parents. He came and met with us. He sent out word through all the local churches to begin to pray for Gregory’s recovery.

Praying for Gregory

I went from not thinking about God to thinking about nothing but God. The “Green Eggs and Ham book” was replaced with the Little Golden Book of Bible Stories. I bought a bible. We visited, we prayed, we watched for urine. Gregory’s body swelled to twice his weight in water – it looked like his testicles were going to burst. He turned green from the jaundice caused by his malfunctioning liver.

One day when I got to the hospital, I looked for Gregory’s lead nurse, Jennifer, who had been taking care of him since he came to New York Hospital. She is the same one who had unfortunately been on the other end of the phone when I called the hospital the night he was born. She had been assigned to another baby and was in tears. They had told her that she was too close to Gregory and that she couldn’t take care of him anymore. I begged someone at the hospital to listen to reason. No one would. They didn’t want her heart broken. We were all way beyond that point.

We tried to stay positive. One doctor would come by and say “Gregory looks a little better today.” Five minutes later, a nurse would say “Gregory looks a little worse today.” Another week passed. Gregory started having seizures. The doctors explained how serious that was. It was decided that they would do a cat scan and see if there had been brain damage and if so, how much. We had an appointment with the head doctor to learn the results. We waited outside his office. I saw him shuffling papers. Moving them from one part of the credenza to the other. He was in no rush to speak with us. When he couldn’t stall another moment, he called us in.

“I am sorry to give you this report, but every part of Gregory’s brain has been damaged but one. We are not sure which part that one area controls, but he will be severely handicapped if we can even get the situation with his physical body resolved.” The world stopped spinning. The planet crashed into a brick wall. “I was on vacation when he was operated on. He was the healthiest baby in N-5, now he is the sickest baby here. I don’t know what to say except that if he was two or three or five, it would probably be even harder to lose him. You are young. You will have other babies” he stated. That didn’t feel like much of a consolation to either of us. “What do we do now?” I asked. “It is all in God’s hands” he replied. “This is one of the best pediatric hospitals in the country and that is all you’ve got”I replied. “We doctors realize one thing for sure – it is all in God’s hands.” he stated.

I went to see my six week old baby. “Gregory, I have something to tell you. You are not going to stay here with mommy and daddy. You are not going to ride a pony or swing on swings. You are going to go to a place called Heaven. I promise you that I will never, ever forget you. Please know this – if God would let me switch places with you, I would give up my life for yours in a second.

I wanted it to end for Gregory and for us, but ending meant I wouldn’t see him anymore and then I would have to bury my child in the ground and live my life without him. There was only one question remaining. Could I handle being there at the moment of my son’s death? The days passed. One after another. On April 6, l982, God took the answer to that question away from me. It was Tuesday of Holy Week. North Jersey was hit with a blizzard the likes of which have never been seen in April. The roads were unpassable. I stayed home that day. We got a call from the hospital that night. “Come now. We don’t expect it to be much longer.”

My brother-in-law Jimmy picked us up in his truck and maneuvered his way to New York Hospital. We got off the elevator and saw Fr. Allen pacing back and forth. It was 8:40 PM. I knew it was over, but I asked anyway. He told me that he and all the nurses on duty held hands and said good-bye as Gregory closed his eyes and left this world. He had died at 8:30. God was right, it would have been more than I could have handled. Fr. Allen asked if I wanted to hold him.”Yes, of course.” We were brought into a private room and Gregory’s lifeless body was handed to me – free of tubes! I could actually walk back and forth with him in my arms for the first time. He looked so content. So at peace. So free.

Gregory’s tiny body was brought to the funeral home a few blocks from the church. My parents and my husband’s parents didn’t want to see him after he died. It was just too painful. On Wednesday and Thursday, I got to hold him again, but his body was going rigged, and time was growing short. Gregory’s funeral was planned for Saturday, April 10, l982, which was Holy Saturday that year. We sat at the funeral home wondering how we would get through that day.

“What do you want him to be buried in?” we were asked. Not a question a young parent ever plans on being asked. The Yankee onesies was our mutual decision. We really should bury him with his two favorite rattles. He just loved holding them. “There is a section in George Washington Memorial Park in Paramus which is only for babies under the age of two. Do you want to buy a plot there?” the funeral director. Now if there was ever a place that SHOULD NOT exist on this earth, it is place where children under two are buried. Every time I thought I had hit bottom,bottom took on a new meaning. “They do not manufacture wooden coffins for infants. There isn’t enough call for it, and therefore, not enough profit. You can purchase the upgraded coffin for an extra $89.” It looked like a styrofoam cooler. “You can’t be serious. It looks like a stryrofoam cooler.””That is only option unfortunately.” Fr. Allen said that his wife Judi would sew a beautiful funeral pall so no one would see the casket itself. The funeral director tried his hardest to stay professional, but he was a young man with young children. His heart ached for us.

Now all there was to discuss were the details for the funeral. Our thoughts turned to Fr. Allen. The funeral would be hard – no impossible – for us, but we did not have to speak. We all wondered how Fr. Allen would make it through Gregory’s funeral. The whole congregation had been affected. We knew how much he loved our son. One day he had said to me “you might think that this is strange but I feel the closest I have ever felt to Jesus when I am with Gregory. It is why I visit the hospital late at night. I don’t understand it, but there is something special about him.” This was said before any of us had any inkling that Gregory was going to die. “I know what you mean Fr. Allen. Its like he is not one of us.” So many of the nurses had said similar things to me before Gregory got sick. No one could quite express it in words except to say there is something “different” about him – something “special” about him.