Sixteen years ago my husband, Al, and I experienced the most joyful and worrisome time of our lives. My pregnancy began like most, a bit of morning sickness and hours spent reading the book, “What to Expect When You’re Expecting.” Three months into the pregnancy my blood pressure began to rise, and I started to retain fluid. I visited the OB every other week and watched my salt. Despite my best efforts, I was admitted to Women & Infants at 5 ½ months. I truly expected to spend the next couple of months on my left side eating a low salt, high protein diet. My family and husband visited daily, and I felt scared but knew I was doing the right thing for my baby. As the week progressed, my kidneys were not working well, and my pressure was still uncontrollable, and I was very swollen.
About 1 ½ weeks into my stay it happened. I started with cramps, but they did not register as contractions. By 7:00 that night there were contractions, and medicine was administered to stop the delivery. Our goal was to make 32 weeks, we were only at 27 ½ weeks. A fear overtook Al and I that I cannot explain. The next couple of hours seem a blur. The medicine to keep my pressure down and prevent seizures made me very groggy, and I would awake in pain from the contractions, ask question, and doze off. During this time we were approached to enter our baby into two studies that were going on at the hospital. One was for surfactant, which would help his lungs. The other was for Indomethacin, this medicine was to stop hemorrhaging in the premature infants’ brain. We signed both studies believing that we would help this baby have the best chance.
He was delivered at 2:37 the morning of June 20th. The team whisked him away. When they returned, the baby was in a little plastic bag up to his shoulders, laying in an isolette. He was incredibly small, covered with blond fuzz, one eye open, you could see each rib.
Al and I asked the nurses for a baby name book, and we chose Zachary, which means “who God remembers.” The journey began that day, and it has been a wonderful ride. We asked all the questions, and the staff was very helpful in answering. We were told that the birth weight was 920 grams, about 2 pounds. He was attached to a respirator to help his small lungs to breathe, which was taped in place across his little face. An IV line had been inserted in both arms, and they were strapped with tape to a stiff board. He had four monitoring wires attached. He lay prone in a Lucite box on a warming table, and the entire thing was wrapped in plastic wrap. It was a sight that I will not forget. These emotions are not ones that I can express in words, although feel them as strong today as I did that morning. As I sit here at the computer with tears running down my face, I made a promise to that little baby and God that if he got better, I would be the best Mom I could.
We were told that there would be ups and downs along his stay. My mom and sister would drive me into the hospital each morning and home each afternoon. Al and I would return after dinner and stay until 10:00. We watched Zach lose weight the first week, nearly 200 grams. The first positive was Zach’s ability to come off the ventilator in 3 days. He had received 3 doses of surfactant, and they had worked just as we had hoped. He was given a nose canula to help provide oxygen. We were thrilled! When the time came to begin gavage feeding him, 5 cc of milk (1 tsp), we were so excited, maybe he would begin to gain weight.
We arrived one evening to find that his small intestines did not tolerate the feedings, and there was concern of a perforation in the intestine. The feeding would be stopped for now, and antibiotics would be administered. They were trying to avoid the need for a colostomy bag. The joy of the first up was gone, and the fear set in.
During a visit a few days later, the alarm sounded and the nurse came and gave Zach a shake and then reset the alarm. I gasped, what happened? They said he had begun to experience apneas. I didn’t know what that was, but she explained and offered that this was a normal problem experienced by the premature infants. I sat and listened to the alarm sound on and off throughout the day. My nerves were shot. To stop breathing sounded to me like an enormous step backward. I stopped at a rest area and called Al at work to tell him what had happened. He met me, and we raced back to Women & Infants. Al is the calm one in the family. He asked all the right questions, and I began to understand the situation.
Over the next few days, I found myself rocking my child in his isolette to remind him to breathe when the alarm would sound. We were in a routine – scrub, don a gown, and ask the covering nurse all the pertinent questions. Weight, feedings, apnea, jaundice, and anything personal she could tell us that we might have missed. Eventually he wore a very tiny diaper and a newborn t-shirt that worked nice as a hospital gown on Zach.
Then the day came when I arrived in the NICU, and they gladly told me that Zach was well enough to be transferred to the level two hospital. At first we were uncomfortable with the idea. We felt secure knowing Zach was in the best place. I could call at 2:00 in the morning and speak directly to his nurse, and she would put my restless mind at ease. The bright lights and constant noises had become somehow normal for us. These wonderful people had performed a miracle in our eyes, they had saved our tiny child, and he was beginning to thrive. Thrive, a word that I never truly understood the meaning of, until this experience.
The nurses explained that Zach now need to gain weight, maintain his body temperature, and learn to suck and feed. He would be transferred to a hospital closer to our home, and the unit would be dimly lit and quiet. I quickly dispatched Al to check the place out – he called and said it was just what we needed. Zach could sleep and grow in a quiet environment, we would have more time to spend with him because of the proximity to our home. We were on the move, we said “Thank you,” and told the staff we would be forever grateful.
Zach spent 2 months and 3 weeks in the hospital. He returned home 3 weeks before his due date, just 4 pounds 1 ounce. Zach was enrolled in an early intervention program where they helped us with fine and gross motor skills and speech. Zach was walking by 13 months and began talking, more than single words, at age 3. Zach has continued to be monitored by the Indomethacin Study, and we recently received a medical journal article with the current study results. Zach and I found this very interesting. I believe surfactant is now and has been for some time given routinely to premature infants. What a wonderful combination of medicines.
My little angel is now 16. This week we went to the registry, and he got a drivers permit. These years all went by so fast. He stand 5’ 9” tall, still skinny at 130 pounds. Zach spends time with family, friends, he is a teen mentor with the local PEERS chapter and a founding member of YAC, a group that organizes teen events in town. He volunteers weekly at our local after school club helping with homework and playing game with the children. Zach has been fencing for 4 years and spends summers on the Westport River in his aluminum skiff or kayaking with his buddies. He works as a dishwasher at a local breakfast spot and babysits.
He’s a normal teen who managers to find time to play crazy video games, magic cards and rock out to very loud music. He just finished his sophomore year at Portsmouth High School, where he would have made a full year of honors if not for a C+ in Spanish second quarter. He will be taking chemistry, English and history AP courses next year, along with the honors math. It is a very big challenge, but he is up for that challenge, and it seems in Zach’s life, right from the start, he has been “up for a challenge.”
Submitted by Deborah and Al Toree