It is mid-October, and my baby Jesse is turning five in a few weeks. I'm still reeling from the fact that I'm a mother now, and my baby is turning five. A small but energetic voice snaps me out if it. "Mommy! Look! A WowWee! Can I have this for my birthday?" I look up to see him grabbing a box with a red robot off the store shelf. "A wow-what?" I asked. After recently packing up six garbage bags and five totes-worth of toys out of his playroom (and three more totes earlier this year), I was fairly certain I knew about every toy on the market. "It's a WowWee, mom, see - it's a robot called a WowWee that rolls around and his head pops up and his eyes light up and he talks, see?" He was too excited to take a breath. "Can I have it?" he asks, already tossing it into the shopping cart.
I look at the price on the shelf. $14.95. Not bad. "Well, I suppose." Thankfully he did not see the much larger version of the WowWee robot two shelves higher, priced at $79.95. We continued strolling up and down the aisles, browsing through the rest of the toy department. I find an educational toy laptop and sneak it into the cart. Five years (and nine months) ago, I was ecstatic about the possibility of becoming pregnant for the first time, since Brian and I decided to let nature take its course. We had been married for three years, and decided the honeymoon period was over; it was time to create a family. When we were dating and had begun discussing marriage, my mother's main concern was becoming a grandmother. She was delighted at the thought of becoming a mother-in-law, but was worried the title “Mamaw” would follow too soon after.
She reminded me of this persistently throughout the first three years of my marriage. Brian's parents, on the other hand, were ready for grandchildren as soon as Brian asked me on a second date. Of course Brian and I were in agreement that we wouldn't make those plans until we had been married for at least a year; but I can remember one isolated incident where he had a total lapse in judgment. His parents’ badgering had gotten to him, and he began to consider it. “Brian – I just spent $800 on a wedding dress. If we get pregnant, I won't be able to wear it,” I explained. “You’re right; I don't know what I was thinking.” When Brian and I finally made the decision to have children and announced our plans to our parents, Mom's concerns about becoming a grandma vanished. While shopping at the Wright-Patterson Air Force Base Commissary, she picked up eight pregnancy tests in preparation for me. They cost about $5 at the commissary, versus $15 dollars at a regular grocery store. She explained, “You should be set for the next eight months.
Since they’re so cheap at the Base, you can test every month whether you think you’re pregnant or not.” This prodded my baby-making adrenaline to flow. I worked second shift as a machine operator spreading fabric, and got home close to midnight. Brian also worked night shift, but didn't get home until 6:30 a.m. I would stay up each night in order to see him; otherwise, we wouldn't spend any time together other than weekends. Each night when I got home from work, I would logon to the computer and research conception. I learned that in order to be organized and know when you’re ovulating, you needed to use a conception chart. I created my own (downloading one just seemed impersonal, and I knew I could make one best-suited for me). I was quite proud of my chart; the professional quality was outstanding. I then printed a brightly colored chart for each month of the year, and put them together in a presentation folder. (When you don't have children, you have all the time in the world to do ridiculous things like this.) Each morning as soon as I awoke, the chart required me to record my temperature. For the first few days of documentation I had a slight fever. It was winter after all, the middle of flu season, so I figured I was probably coming down with something.
Nausea and vomiting were prerequisites to morning sickness anyway, right? And I had neither. I felt great, other than being slightly achy from the fever. I spent so much time perfecting and reprinting my little charts each night that I hadn't yet gotten around to the next step, which was checking which symptoms indicated pregnancy. My perfectly professional chart highlighted which day my menstrual cycle should start, and on which day to take a pregnancy test if it hadn't. When I finally got around to checking that part, I noticed that I was “late” by several days; according to the chart I should be taking a pregnancy test the following day. It just so happened that I was already pregnant – my gorgeous little charts a waste! Not only the charts, but the remaining seven pregnancy tests I had stored in the medicine cabinet. And what is there to do with an abundance of pregnancy tests, but to test again and again, just to be sure? As it turned out, I was 600% pregnant; although Brian received a negative result, as did Violet, our dog. I had a perfect pregnancy.
I never did get to experience morning sickness. The only discomfort I felt was heartburn whenever I ate tomatoes or something acidic. No weird cravings either; just an extreme need for ice cold milk, or ice water with a slice of lemon. My doctor said I was allowed to gain 30 pounds – I gained 28. And although we decided to keep the gender a surprise, I knew in my heart it was a boy. During my pregnancy we were in the process of building a house. One Sunday afternoon my parents and I were attempting to clean the mud off of the new basement floor. I bent over to pick up the dust pan, and when I stood up, I realized I had fallen victim to incontinence for the first time in nine months. Too embarrassed to tell my parents that I had peed my pants, I instead told them that I was driving to their house to use their restroom. Toilets had yet to be installed in our house, and my parents’ house was only five minutes away. They nodded – don't question a pregnant woman who claims she needs to pee. The incontinence continued throughout the evening.
Brian and I joked about it, and marveled at how I was able to control my bladder up until now, since my due date was only three days away. However, when I was unable to control it through the night while asleep, and the next day while getting ready for work, I worried that it was actually something else. My water, perhaps? We had learned in birthing class that the “gushing” of water from a broken sac was a myth. Especially if the sac breaks near the top. In those instances, the water dribbles down slowly. Each time I moved and put pressure on my belly, I would feel a slight push of liquid seeping out, which felt a lot like incontinence. I called the OB/GYN, and she laughed. “Sounds like your water broke; you need to head over to Bethesda Hospital as soon as possible.” I was thrilled, and also quietly relieved to know that I had not been wetting the bed all night. The delivery was a breeze. Although it lasted a very long time, I slept through most of it; and when it was time to push, I felt no pain. Within half an hour my baby was born. "It's a boy!" my mom cried. "A boy?!" Brian's mom exclaimed. "Yep, a boy!" my mom confirmed. I remember not feeling the least bit surprised. They weren't telling me anything I didn't already know.
What did surprise me was when Jesse was laid in my arms the first thing that stood out was his tiny cleft chin. I hadn't expected to see my own features in him when he was only minutes old. Delightful yet tiny, he weighed only 5 lbs 11 oz. We stayed in the hospital for the typical three days. During that time Jesse never cried; only whimpered every once in a while when he needed changed. The only problem I was having with him was that he seemed to have no appetite, and would constantly fall asleep when he did eat.
The nurse showed me some tricks to keep him awake, such as stroking behind his ear, or tickling the bottoms of his feet. They didn't always work, but the nurse assured me that this was normal, and eventually his appetite would pick up. On the third day as I was packing up our things, a nurse came in and explained to me in a low voice that she had been concerned about Jesse's pale color since he was born, and had a cardiologist look at him earlier that morning. She said they heard a murmur in his heartbeat and his oxygen level was low, and that they decided it was best if they kept him for a few more days in the NICU. I was devastated, and suddenly realized that one of the worst feelings a parent could have is knowing you have a healthy baby one minute, then a moment later finding out something was wrong, but no one can tell you what it was. And he wasn't just staying overnight; they already knew they needed to keep him for at least a few days. What did that mean exactly? As Brian slept on the couch next to my bed, unaware of what just happened, I cried silently and said a prayer. Dear God, please let him be okay. If he's feeling any pain, please let me bear it for him. Just keep him safe and let him get through this.
I had to finish packing my things and leave without my baby, not knowing if he was going to be all right. I saw the cardiologist later that day, and she explained that all babies, while still in the womb, have a tiny hole in the heart that closes in the days before birth. In the rare instances when it hasn't closed, it usually happens within twenty-four hours after birth. She told me that this was probably the case, but since it had been more than twenty-four hours, they needed to monitor him to make sure that it closed up soon. By the end of the week his condition had not changed, and the following Monday when he was one day shy of a week old, Bethesda called to let me know they were getting ready to transfer him to Cincinnati Children's Hospital. My mother and I rushed to Bethesda, watched as they prepared Jesse's transport crib, and followed the ambulance to Children's Hospital.
By the time we got ourselves signed in and found where they had taken him, a cardiologist had already performed an echocardiogram (an ultrasound that uses sound waves to take pictures of the heart) and was sketching a diagram for a group of doctors explaining the procedure that would need to be done. I disregarded them; assuming they were discussing another patient, even though they were standing at the foot of my baby's bed. Another cardiologist stepped away from the group and came over to update us. She explained that in addition to the small hole in his heart, which was called an Atrial Septal Defect (or ASD, which is a hole in the wall between the heart's two upper chambers), Jesse had a second more serious heart defect called Total Anomalous Pulmonary Venous Return (or TAPVR, a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium, but instead drain abnormally to the right atrium). In other words, his oxygenated blood was flowing back and forth between his heart and lungs instead of throughout his body, resulting in low oxygen levels.
The cardiologist showed us the sketched diagram as she explained, and let me know that Jesse would need open-heart surgery within the next couple of months in order to repair the defect. Fortunately, that tiny hole in his heart saved his life by allowing a small amount of oxygenated blood to escape to the rest of his body. If not for the ASD, he would have been sent immediately into surgery, if he had survived at all. Jesse stayed at Cincinnati Children's for another week, and was allowed to come home with us temporarily, just in time for Thanksgiving. That holiday was a very quiet one. We were instructed by the doctors to only allow a few visitors at a time; and of course no one who had recently been sick should be allowed in the house at all. Anyone who did visit had to immediately scrub up before coming near him, and the hospital gave us a special type of soap for this. In the meantime, we were instructed to do whatever we could to get Jesse to eat and gain weight.
They needed him to be at least six pounds for surgery. Since birth he had lost weight, and was teetering on the edge of four pounds. We learned that the reason for his tiny appetite was that even the simple act of eating put strain on his heart, causing him to become exhausted quickly. This would also be the reason why the little tricks to keep him awake long enough to eat didn't work. They had sent me home with a high-calorie formula to mix with the breast milk I had been saving. Our goal to fatten Jesse up to six pounds was a struggle. A home nurse visited a couple times a week, and once a week we were going back to Children's hospital for check-ups. When the doctors decided that he wasn't gaining weight fast enough, they inserted a nasogastric feeding tube through his nose. They taught us how to feed him; which consisted of pulling a small amount of air through an empty syringe, connecting it to the end of the tube in Jesse's nose, and quickly pushing the air from the syringe through the tube, at the same time listening to Jesse's stomach with a stethoscope.
If we could hear a small popping sound, then that meant the other end of the tube was where it needed to be – in the stomach. If we heard nothing, then the tube had pulled out a little, and we would have to adjust the tube and repeat the process until we heard the pop. We also had to make sure we got the tube in the right place within the first few tries, because more than a few puffs of air would cause Jesse to have a bad bellyache. Once everything was ready to go, it was time to connect a different syringe, this one containing breast milk mixed with the high calorie formula, which was fed to him slowly to ensure that it stayed down. If he was fed too quickly, he would vomit. We were also sent home with a pole-mounted infusion pump system that fed him consistently throughout the night. Jesse eventually gained weight, although still not as much as the cardiologist had hoped. When he was about a month old, he was almost up to six pounds. The cardiologist was happy enough with that, since surgery couldn't be put off much longer.
Jesse had open-heart surgery when he was five weeks old. Watching his tiny sleeping body be carted away down the hall to the operating room was heart wrenching. It's very hard to describe the feeling you have when you are faced with the reality that your baby is about to be put on extracorporeal life support in order to perform this surgery. Brian and I held each other and cried for a few moments, then collected ourselves before going into the waiting room where a group of our relatives had gathered to wait with us. Some of them drove up from Kentucky knowing that they wouldn't be allowed to visit Jesse; yet felt it was worth the four hour drive just to offer moral support. The surgery took about six hours, and afterwards we were taken into a small room where the cardiologist described the surgery, and informed us that Jesse looked wonderful and would be perfectly healthy once healed. We weren't allowed to see him right away, but it was comfort enough to know that he was fine now. He would be able to run and keep up with children his age, and play any sports he chose to in school. Jesse was fortunate enough to be born with a defect that required only one surgery, and would have no setbacks during his life. Several hours after the surgery we were taken to the cardiology NICU to see Jesse. Brian and I were taken aback – we were not prepared for what we saw. His tiny body was laid in a crib under a heat lamp, with his arms and knees spread in a position much like a little frog after dissection. He had no shirt on, which made his incision visible. The stitches that were used were internal, and on the outside of his chest were adhesive butterfly stitches.
His face was slightly puffy, and his eyes and mouth were partially open. He looked like someone who had just passed away but was still warm to the touch. We would have thought he was dead had it not been for the slight pulsating of the artery in his neck. There were at least a hundred wires and tubes curled around him in his bed, all hooked to monitors and machines. Two tubes, almost as thick as pencils, disappeared under his skin near his ribcage. These were drainage tubes; a slow trickling of blood mixed with a watery liquid flowed through every few seconds. There were also six thin wires penetrating his skin – three located under both of the drainage tubes. We were told that they were pacemaker wires attached to his heart, ready to send a shock in the remote chance it stopped. Although what Brian and I saw was horrifying, we noticed something positive - his complexion. Jesse was now a bright healthy reddish-pink - the color he should have been at birth. An incredible transformation from the yellowish-gray skin he was born with. He looked like a completely different baby. Jesse's road to recovery was slightly bumpy, and was rough on Brian and me as well. Because of everything we had gone through, I had to take the full twelve weeks maternity leave I was allowed by law, but was only paid for the first six weeks. Brian had to go back to working his twelve-hour shift right away, leaving me to spend most days at the hospital alone.
Those first few days after surgery while Jesse was in the NICU were challenging. I sometimes felt like I didn't know what I was doing, because not only had I no experience holding a newborn, I had no idea how to hold this one, who had tubes and wires coming from every direction. It was tricky attempting to position him in my arms around these obstacles, and even more of a struggle to do it without disturbing his incision and drainage tubes. The absolute worst part was when he coughed. He had a lot of mucus built up in his chest, and when he coughed it sounded like he was vomiting. I had to abruptly prop him up so that he wouldn't choke, and do it carefully in order not to injure him. Jesse stayed in the NICU for only a few days, and then was transferred to the cardiology recovery unit. By then his persistent coughing had subsided, and most of the wires and tubes had been removed. He was much easier to handle. Each day that I came to see him, I found new gifts throughout his room that had been donated by other parents who had been through similar situations.
Often when I left his room just long enough to get a bite to eat in the cafeteria, I’d come back to find a new little treasure in his crib. Teddy bears, baby rattles, blankets and musical crib toys decorated his bed. One parent even donated a tiny blue and green gingham baby outfit, which ended up being one of my favorites to dress him in. My family was overwhelmed by the outpouring of compassion showed by other parents; none of which we ever actually got to meet. The generosity didn't end there. One evening while rocking Jesse to sleep a nurse came in and asked if I would make a list of toys or baby products I would like to receive for Christmas. She explained that a holiday party was being planned for all the patients staying in the cardiology unit by an organization called The Aubrey Rose Foundation. (Aubrey was a toddler who died two days before her third birthday; one year after receiving a heart and double lung transplant. Her parents set up a foundation to provide moral and financial support for struggling families with heart patients.) The nurse went on to say that every year the foundation organized a Christmas party, and bought gifts for the children. I told the nurse that that wasn't necessary, since we had already received so many gifts in the short amount of time we'd been there. She insisted. “This family has so much money they don't know what do with it. Let them help you.” She suggested that I make a list of anything that perhaps I didn't receive at my baby shower.
That didn't help me, because I had been given three different baby showers, so pretty much everything was covered; except for one thing - a Diaper Genie. That was the only item I could think of to list. The Christmas party was a larger event than we had expected it to be, complete with an enormous buffet and a magician for entertainment. Even a few of the Cincinnati Bengals football players showed up to sign autographs and meet some of the children who were healthy enough to attend the party. Brian had to work, but both my parents and his attended. One Bengal player, Kevin Kaesviharn, actually sat and had dinner with my family, and sincerely wanted to know all about Jesse. I was impressed, as he was the only player to venture away from the group in order to mingle with the families. Also, Aubrey Rose's mother, Nancy, asked to sit with us. She inquired about Jesse, and then told about her family's experience dealing with Aubrey's life and death. I quickly learned that she and her husband were very strong people, both emotionally and spiritually. “We have learned that Aubrey was sent to us for that short period of time to educate her doctors, and to teach us that God never gives us more than we can handle.” I became emotional; it was hard enough dealing with a sick newborn whose future was positive, but to have a child that passes after only three short years of life? Nancy consoled me with a hug. “It's okay to be emotional; my family has certainly had its ups and downs. But as a result of Aubrey's passing, we now have this amazing opportunity to help other families through our organization in her name.”
After dinner, it was gift-opening time. Along the walls were separate piles of presents, with a name taped on the wall above them. I went to find Jesse's, and expected to only find one gift – the diaper Genie. Instead, there was a large pile. I can't even remember how many gifts there were, only that the pile was about waist-high. My family was astounded. Now it is five years later. The only visible reminders we have are Jesse's scars; a line down the center of his chest, along with two scars on his ribs from the drainage tubes, and six pinhead-size scars on his belly from the pacemaker wires. And because Jesse scars rather easily, he also has tiny needle marks on his wrists, the backs of his hands, the tops of his feet and around his collarbone from the many IV's he endured. On the inside, he's perfect, although "wired" a little differently. During his yearly visits to Cincinnati Children's, his cardiologist, Dr. Kimball, always ends the check-up by saying, “If I didn't know that he’d had surgery, I wouldn't be able to tell. His heart beat sounds exactly like a normal one.” I can remember wondering how healthy would he be when he turned five, and if he would be as energetic as other children his age, or if he would tire easily instead.
I have learned that when the first cardiologist I met said that Jesse will be as normal as any other child, he wasn't just trying to appease me. Sometimes I wish Jesse would tire more easily, because his bursts of energy lasting eight hours or more at a time leave me feeling exhausted and ready to crash at the end of the day. "Mommy, what can I have for my birfday?" my three year old son, Shane, asks. "Well, since your birthday isn't for a while, you can pick one toy for Christmas," I said. He exuberantly grabs a Batman with giant fold-out wings and tosses it into the cart.
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