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 |  Journal writings about my youngest son's journey with spina bifida |
| My youngest child was born with a spinal anomaly. From the 17th week of my pregnancy, we knew that something was not right. This journal chronicles all the feelings and experiences we have gone through. From utter helplessness to wracking tears to immeasurable gratitude to God for His blessings. I will take you on this path that we have walked and I hope you will see the encompassing love for our son and our faith in the Lord. God bless. |
| The nurse told me to wait. "Don't push," she instructed and left the room to call the doctor. I moaned and twisted on the hospital bed and tried to follow her instructions. Within minutes, the doctors, the nurses, and the neonatal team from the NICU were all in the room. I don't remember the doctor telling me to push. When I try to recall those moments, all I can see are the incubator and the neonatal nurses standing beside it, waiting. It felt like their team took up the whole room, although they only numbered four, and they were off to the corner. I pushed four times and felt his little body escape from mine. They put him on my chest and I began to rub him with the blankets. A nurse reached in and gently grabbed my hand. "Be careful of his back," she said. I would have thought that would have devastated me. That it would have ruined the moment. But it didn't. It registered and I carefully rubbed his arms, his legs, his head. I felt his soft skin and looked at his squished-up eyes. He squirmed and stretched. And moved his legs. Moved his legs. Oh, God. God, thank you! Tears were running down my face and I could see that he was perfect. A perfect baby. My perfect baby. And, for a moment, it felt like it was just he and I in the room. But, they had to take him. They came in and murmured comfortingly to me. They oooh-ed and ahhhh-ed over how cute he was. They assured me they would take good care of him. And then they took him. They brought him over the incubator and laid him on his stomach. I couldn't see what they were looking at, but they studied his back, carefully, pointing something out to my husband. Then, they wrapped him up. Closed the incubator. And took him away. I was alone. The doctors had finished taking care of me. The nurse checked my vitals and smiled, sympathetically. "He's getting the best care," she said. "I'll let you know the minute I hear something." She patted my hand and waited for me to let her know I would be okay. I felt like they had ripped out my heart. Somehow, I managed to look at her and nod, slowly. She understood that that was as much as I could give her. So, she left to keep working. And I layed in the bed and sobbed. Alone. |
| My husband and I had long decided that he would stay with our baby after birth. He would go with our little guy wherever our little guy went. I made him promise, over and over, that he would not leave our baby. It was overwhelming how important it was to me. I would tell my husband how our baby needed us and, because I couldn't be with him, my husband must be. My husband promised each time. He never placated me or told me we had been over this before. He would just promise me, again. So, when our baby boy was moved up to the NICU, Daddy was with him. My husband followed him through the unit, to the end room, where our baby's incubator would stay. He stayed with him as nurses and neonatalogists studied our son and connected him to numerous wires and started an IV. He hovered in the background as they monitored our baby's vitals and discussed the growth on our son's back. He reached his large hand through the holes in the incubator and stroked our son's tiny hand. He never left him. He stayed there, and was there still, when the nurse was finally able to bring me to my son. Two hours after I gave birth, I was wheeled upstairs to sit by my little boy's isolette and wonder at him. To smile at how beautiful he was and to pray while stroking his smooth arm. And so we were there, together. A mom and a dad and our son. A little family, amidst the business, the brightness, the clinicalness of the NICU. Through the locked double doors, down the long hallway, the last room on your left, the first isolette. |
| We named our little boy Jackson, Jack for short. He had a light covering of light brown hair and large, bright blue eyes. He was over eight and a half pounds and twenty-one and a half inches long; so he was a strapping, young baby. His skin was soft and smooth and unblemished. . . except for the spot on his back. Just above his little cheek-bottoms, there was a bluish circle. A bump, about one and a half inches in diameter. It wasn't large and was unbroken. When he tightened his muscles, it would sink down into his skin, like it was being sucked down. They kept him in just a diaper in the NICU, so they could monitor this bump easily. The isolette kept him warmly enclosed from room temperature. The pediatric surgeon came and studied the bump. The neonatalogist on duty monitored the bump and discussed it with the residents. They alternately rubbed it or pushed it or left it alone. Finally, everyone said the same thing. "We don't know what it is." The chief neonatalogist told us he had been doing this before my husband and I were even born and he had never seen anything like this. The words came out casually, but hit us with full force. Now what do we do? What comes next? Jack had an MRI and an ultrasound. They performed x-rays and a barium enema. Still, no one could figure out what this was. The pediatric surgeons brought his films to the University Hospital an hour and a half away to have a radiologist read it there as well. Again, no answers. Surgery was scheduled for when Jack would be three days old. They were calling it "exploratory surgery." It was to remove the tumor and biopsy it. However, because they weren't fully sure of what they were dealing with, the surgery was only tentatively scheduled. It could happen or it might not. So, we waited. |
| The day of surgery, they still hadn't come to a concrete decision on whether or not it would occur. The OR was reserved for 2pm. A little after noon, after Jack's nurse told us that it still hadn't been finalized, my husband and I went for a quick lunch in the hospital cafeteria. After eating, I stepped outside to call my parents, who were staying with our other three children. The hospital had a nice area outside the main hospital doors with benches and beautiful gardens. It was overcast and it was misting just a tiny bit. I stood in the fresh air and breathed deep while I explained what I knew to my parents. As I looked up at the gray sky, I felt amazed at how big it looked. Our world had become so small. We went back inside and rode, quietly, up in the elevator. The NICU receptionist saw us come around the corner and said, "Oh! There you are! They're looking for you." She hit the button that opened the double doors, and we saw our nurse and another nurse dressed in scrubs pushing Jack's isolette down the hallway towards us. She called out to us, "You're just in time! They're taking him to the OR." Our little son was lying quietly in his enclosed isolette, rolling towards us. We had almost missed him. The hallway seemed long and bathed in a soft light. That moment will stay with me forever. Watching him come towards me and knowing I had to let him go. Again. |
| The OR nurse held out his hand and explained that he would be taking care of our baby during the surgery. He was dressed in blue scrubs and, although my first reaction to the sight of him had been fear, he had a very calming and reassuring personality. He and Jackson's NICU nurse guided Jack's isolette down the hall, out of the NICU, and to the elevators. I walked right alongside Jack and kept my eyes on him. He looked so small and it seemed so wrong that he should have to go through this. I should not, should not, be bringing this three day old baby to an operating room. We waited for the elevator and Jack began to squirm. I reached into the isolette through the round opening and began to gently stroke his cheek. In response to my touch, he calmed down and laid quietly again. I marveled how just my touching him could have such an effect. That was very much a blessing from God. That moment. It made me remember that, not matter what, I was his mom. We rode down in the elevator. The nurses talked to each other and tried to make small talk with us. My face felt pale and taut and my eyes continuously swam with tears. They realized it was too hard for us and kept silent, except to give us small smiles, meant to be reassuring. And, still, I kept my eyes on Jack. A short walk from the elevator took us to the OR waiting room. An older gentleman was lying on a stretcher, with his wife by his side. They watched us walk in and their faces showed concern for us. I guessed at what they were thinking. What was wrong with this tiny baby? Why would a baby need surgery? The waiting room was just one long room. There were no partitions. No privacy. The nurses stopped Jack's isolette and plugged him into the wall outlets there. I stood by him and began to, again, memorize every part of him. I touched him softly, resting my hand inside, by him. Feeling him. Willing him to be all right. I prayed. "God, please let him be all right. Please let him be all right. Please let him be all right." The tears that had kept forming flowed over. I know my husband was right beside us, but I was so focused on Jackson that it felt like it was just us. I was his link to being okay. I couldn't look away or disconnect from him even for a moment. And I don't even know if that was for Jack or for me. So that if something happened during surgery that I would know that I had been completely with him and loving him every moment I could. That I would know he had never felt alone. I kept my hand inside the isolette right up until they came to take him into the operating room. And as they told me it was time for him to go to surgery and were waiting to wheel him away, I couldn't make my hand move. Time stood still and I can still feel how soft his skin was. Then, slowly and reluctantly, I pulled my hand away and watched him roll away. That should have been hard enough, but I couldn't stop myself from quickly going out the double doors of the waiting room to watch them go down the hall to the OR doors. And that's where I was as my baby went into surgery. |
| There are no rules that tell you what to do when your newborn has surgery. No etiquette guidebook that explains how to fill your time. The nurses told us where the OR waiting room was and that our name would be called when surgery was over. The surgeon would come and tell us how everything went. They said we probably had a minimum of an hour and a half, possibly more. So, we wandered, blankly, down the hall to the OR waiting room and stood outside it. There were benches outside it, too. I asked my husband if he thought we should go in. He said we could do whatever I wanted. Going into the room seemed too concrete for me at that moment, so we sat on the benches outside and watched the people around us. I wondered if anyone else had a baby in the OR. I wondered if anyone else's surgery seemed as serious as Jack's. I wondered why this was happening to us. After a while, we went into the waiting room and I tried to leaf through a magazine. My brother came. He showed up, tall and unexpected, to sit with us and be there for Jack. We sat together and then they called our name. My husband and I got up and looked at my brother. It gave us a minute to get ourselves ready and then we walked out the door. |
| The surgeon stood, in light blue scrubs, in the middle of the hallway. He had his mask in his hand and his surgical cap still on his head. We walked up to him and he smiled and held out his hand. "Surgery went great," he said, and led us into a tiny room off the hallway. I don't think we sat down. We stood and waited for him to tell us that Jack was okay. "Surgery went fine," he repeated. He told us that they had removed the mass on our son's back and it was being sent to the pathology lab to be biopsied. "We did run into a small problem," he said. "We found a small path, running from his spine to the mass." I think he called it a sinus tract. He told us he had left the operating table to call the University Hospital's neurosurgeon to find out how to proceed. This surgeon was a general surgeon; only a neurosurgeon operates on the spine or brain. He explained that the neurosurgeon had said to tie off the path and to keep Jack flat on his back for 24 to 48 hours. That was to prevent spinal fluid from leaking out before the cut healed. We tried to process all this information, but we were focused only on one thing. Just say that Jack is okay. Those specific words. That phrase. Jack is okay. He reached out to shake our hands again, getting ready to leave. He told us that Jack was in recovery and we couldn't see him there. We had to go to the NICU and wait for him to be brought back. It would probably be about an hour. "He's okay?" I asked. Unable to bear it any longer. And he looked at me and smiled. "Yes, he's okay," he said. I felt my body begin to let go. My shoulders had been hunched and high by my head, which I hadn't realized. I felt them fall. I had been leaning forward and I felt myself sink back to an upright position. My muscles had been tensed for so long that I hadn't noticed. Probably since the day I received the test results that told us our baby had something wrong. Not until the muscles began to loosen and I began to repeat and savor those words in my head. "He's okay. Jack's okay. He's okay. Oh, God, thank You. Thank You. Oh, God, he's okay." I sank into my husband's arms and sobbed. Our little boy was okay. |
| We went right up to the NICU and waited for Jack. We held hands and leaned on each other. We felt relief. We felt thankful. We felt blessed. There was a sense of satisfaction; of having come through this experience okay. A sense that it was over. They called us to the unit when Jack got there. We hurried down the hall, so anxious to see our son. And, when we came through the doorway and saw him lying in his isolette, we felt the full force of a blow. Our baby was lying there, so still. He was swollen from all the fluids he received during the operation. The anesthesia hadn't worn off completely, yet, and so he didn't even move a finger. The only movement was his breathing; his chest moving slightly up and down. His little face was pale and looked so small. His IV had been moved to his head, because the veins in his arms and legs had kept blowing. I hadn't even known they could do that. But, here he was, a tube in the side of his head, plastered down with tape and gauze. Our son. Looking like he had been through a war. And, of course, in a way, he had. The reality of what he had just been through came to us, again, full force and we cried. We wanted to pick him up and hold him to us and feel him, safe and solid, in our arms. But, we couldn't. He had to stay on his back for 24 to 48 hours until his spinal cord healed. So that no spinal fluid would leak out through the incision. We sat in the rocking chairs by him and were, once again, left to comfort him, and ourselves, by carressing him through the holes of the isolette. Sobered, but still so blessed. |
| The next few days were filled with learning how to care for Jack's incision and change his dressing. We learned how to cut the plastic that would protect the incision from stool. How to position it on his back and adhere it to his skin. We learned how to cover it with gauze and then, carefully, do up his diaper. This would take place over and over again, with every diaper change. They told us that incisions by the diaper area frequently got infected, so we had to be extra careful. I would move the monitoring wires, adjust his IV tube out of the way, turn him onto his stomach and begin the process, confined to the small space of the isolette. Soon, we were deemed "pros" by the NICU nurses and allowed to take over all of Jack's care. The NICU had a parents' room where parents were allowed to stay for free. It was like a hotel room in the unit. My husband and I stayed there, close to Jack. One of us was with him at all times. We took turns going home to see our other children, taking showers, sleeping. That little boy was never going to feel alone. The surgeon came and told us that they had diagnosed the mass as a saccrocogheal teratoma, just like they thought. It was being sent to be biopsied, but the intial tests had showed it to be benign. Thank You, God! Before we could bring our son home, we had to see another surgeon, a social worker, an oncologist, and take a CPR class. The oncologist scared us. She explained that she would see Jack about every six months to be sure that the mass was not growing back and that he was free of malignant cells. The surgeon would see Jack about every three months for the first two years to be sure the mass was not growing back, then less often after that. The social worker asked us if we had a support system. It was overwhelming in its entirety, and we just wanted to take our baby home. Finally, the nurse told us that Jack would be discharged the next day and that he could stay with us in the parent room overnight. He had been moved to a regular, "open-air" bassinet just the day before. We eagerly agreed. We pulled his bassinet across the hall, into our room, and plugged his monitors into the outlet there. Then, we looked at each other and held each other's eyes. Finally, Jack was ours and ours alone. We were ensconced in our little hotel room in the hospital, no nurses, no doctors. We could turn off the light at night and sleep with our son in the room with us. My husband picked our baby up, cradled him in his big arms, and sank back into the LazyBoy in the room. He picked up the remote for the tv, clicked it on, and began watching a basketball game. Our son in his arms. |
| We took our little boy home, tucked snugly in his car seat. I worried about him the whole way. Worried that it was bad for him to be in a semi-upright position. Worried that the car seat was too hard on his incision. Worried that we wouldn't be able to take care of him the right way. I was so glad to be going home, but scared. I had felt safe in the hospital. The nurses and the monitors and the doctors all doing their job of keeping Jack safe and healthy. Now, it was just us. And, even though he was our fourth child, I had never felt so inadequate. The car ride only took about ten minutes. I cried at least half of it. Once at home, everything blessedly fell into place. Jack fit perfectly into our family and was such a good baby. He slept good and nursed great. He was happy and content and was waited on hand and foot by the people around him. His sisters ran to get his pacifier with every little squeak he made. His brother, after ignoring him for the first couple of days, would stand by the rocking chair and gently rub his head while he nursed. One of the first words our older son said, at 18 months old, was "Jack." Our family was complete and whole and happy. God had taken us through this experience and had blessed us with this gift, this precious life, our youngest son. Two weeks later, we got another telephone call. A nurse from the pediatric surgeon's office was on the phone. She told us the mass was not a saccrocogheal teratoma. The pathology report had come back and the mass had neural cells in it. This, combined with the path they had found that had connected the mass to Jack's spinal column, made it a myleomeningecele. What? I told her I didn't even know what that was. She explained that the spinal cord had not closed correctly and that a path had formed from the spinal cord to Jack's back. She spoke confidently and carelessly. My head was spinning and I simply said, "Okay," into the phone. She asked if I had any questions and I told her no. I didn't even know what she was talking about; how could I have any questions? I hung up and went downstairs to the computer. I typed in various spellings of myleomeningecele until I found it. Spina Bifida came up. I scanned through the search results, continuing to see spina bifida. Haltingly, I picked a site and began to read. Spina bifida has varying degrees of severity. I read through the descriptions until I came to the word I was looking for. Myleomeningecele was the most severe form of spina bifida. My mind tried to understand this new information while my heart screamed "no." I ached and I hurt and I felt broken. My little Jack. My little guy upstairs had spina bifida? I stumbled through the rest of the article. Fluid on the brain, paralysis, bladder and bowel problems, possible mental delays. I turned off the computer and found my way upstairs. I called my husband at work and he couldn't understand me as I tried to talk through my choking sobs. "Spina bifida. Jack has spina bifida." I gasped and clawed my way through it. The cries forced their way out of my chest and heaved their way through my body. I cried in a way that it felt it would never stop. My husband told me to wait and he would call the surgeon's office and find out exactly what was going on. He sounded worried and angry. He told me to wait and he would call me back. So, I went to Jack's crib and looked down at him as he slept. And the sobs were now quieter, wracking their way out of my open mouth in gushes of air. I touched his face and I prayed. With open eyes and a wounded heart, I prayed. And I felt my Lord's arms around me, holding me, as I waited for the phone to ring. |
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