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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. |
| Praise God! Jack came through surgery with flying colors. Everything went exactly as planned and he is now sleeping on the pediatric ward. He will need to stay for three to five days. Thank you, Lord, for your amazing blessings! He still seems to have full use of his legs and feet and all sensation. Praise Him, Praise Him, Jesus our Blessed Redeemer! (Can you sense my joy?) Thank you for all your prayers and please continue to pray for a healthy and speedy recovery. AMEN! |
| We had to be at Mott's Children's Hospital at 6:30am with Jack for surgery. There is a hotel attached to the hospital, so we spent the night there. Little Jack, cozy and warm in his red, penguin, footie pajamas, slept in a crib by our bed. I must have awakened about a hundred times during the night, checking on him and whispering more prayers. Finally, morning came and it was time. We carried Jack through the hallways in his pajamas and wrapped in his blanket. He had sleepy eyes and a confused look on his face. When we reached preop and the nurses began checking him, he began to cry. Burying his head into my shoulder, he sobbed and clung to me. The anesthesiologist said I was not allowed to go back with him, but that they would give him a sedative to make him sleepy and so that he wouldn't remember being taken away from me. He continued to cry, even as they gave him his medicine. The preop room had half a dozen curtained partitions and every partition was filled. Anxious parents and scared children in these early morning hours. The nurses told me they wouldn't take Jack away until he was calm and sleepy. I rested my head on his head and tears fell from both of us. They had marked his head with an oil crayon to show where they would attach electrodes, but I didn't care if I smudged the marks. I only wanted my Jack. My husband watched us and kept touching Jack's arm. He knew I needed this time with Jack and, bless him, he let me have it. Too soon, there was a nurse and two anesthesiologists standing by us. They had with them a red, radio flyer wagon, padded with blankets. I kissed Jack over and over, let dad have a turn, and then carefully tucked him into the wagon. And they pulled my baby away. Lying quietly in a red wagon, looking small under the blanket grandma made for him, and sucking on his pacifier. |
| The nurse showed us where the family waiting room was and we sat down in the row of chairs. I felt sick and fought hard to keep from breaking down into sobs. My husband held me and told me Jack would be okay. He urged me to go back to the hotel room and take a shower. Jack wouldn't even go into the operating room for an hour or two; they would be doing preop stuff, he reminded me. I shook my head and fought him over it for a few minutes. But, then, another couple came into the waiting room and the woman completely broke down. She sagged into her husband's arms and cried. His face was ashen and stricken as he held her. Seeing them, I couldn't take another minute. I had to get out of there before I lost it. I made my way through the halls to the hotel room and closed and locked the door. I walked into the middle of the room and let go. I sobbed as I prayed. And then . . . I felt God's prescence. Within minutes of starting to pray, my cries lessened and I felt a peace. I had been so scared of crying and letting go. Afraid that I wouldn't be able to stop. Afraid that it would hurt too much. But God answered and He answered quickly. It was as if He pulled me into His arms and soothed me as I might soothe Jack. I stopped crying and instead prayed, thankfully, for our blessings. Then, I took a shower and went back to the waiting room. Still scared, but now knowing God was with me, as well as with Jack. |
| The wait lasted a little over four and a half hours. Time after time, the doctors came out and talked to other families. Smiles and nods and handshakes were traded back and forth while we waited. Finally, they came for us. The chief pediatric neurosurgeon came around the corner of the doorway and smiled at us. Thank God. She told us that surgery had gone well and that everything had been perfect. Using the electrodes that they had connected to his head, they were able to determine that he still had full motor use of his legs and feet. His vitals had stayed perfect throughout the entire operation. He was now in recovery and we could see him as soon as he woke up. I couldn't stop myself from reaching out and embracing her. I hugged her and whispered, "Thank you." She actually laughed and patted my arm. "My pleasure," she smiled. My husband and I walked back to the waiting room to wait for Jack to wake up. As we walked down the long hall, we held hands, and I think we were swinging them back and forth as we walked, like giddy little kids. We grinned and chattered and nearly burst with our gratefulness. God is so good. |
| Jack had to stay flat on his back for 24 hours after the surgery. This would keep the pressure off the incision and the bottom of his spinal cord. He was on morphine the whole night, which pretty much knocked him out, so we simply sat by his crib in the tiny hospital room and watched him. Whenever he would wake up and begin to stir, we would gently put pressure on his chest with our hand and whisper soothingly to him until he fell back asleep. Amazingly, he looked good. He was pink and rosy, although groggy. He had an IV in his hand and in his foot, as well as a pulse ox electrode attached to his big toe, which measured his heart rate and oxygen content. But he was snuggled under his soft, fleece, truck blanket and more often than not, he sighed contentedly in his sleep. The next morning, they told us that by noon we would be able to hold him. The sweetest pleasure. |
| Just before noon, Jack's nurse came in and told us that the orders had come through for us to be able to pick up Jack. It was all I could do not to rush to the crib and wake Jack up immediately so I could pull him to me. I only ended up having to wait about another half an hour before Jack began to awaken. His big blue eyes opened and he blinked up at me. I watched him recognize me and he smiled, sleepily, and then reached for me. Carefully, I put my hands on his sides and gently lifted him up and into my arms. I pulled his warm little body against me and breathed in his scent. I ran my fingers up and down his soft shoulder and wondered how twenty four hours could seem like an eternity. Holding my son in my arms, I nestled into the rocking chair and closed my eyes. Now, I could rest. |
| Two and a half days after Jack was admitted to the hospital for surgery on his spinal cord, they sent him home. He had a four inch long incision on his tiny baby back and a drain still in. A drain collects the liquid that occurs as the wound heals. A tube was inserted into his back, under his skin, at the incision site, and stitched into place. The tube was connected to a bulb that collected the liquid so the amount of drainage could be measured. It was a little scary to be in charge of changing the dressings on this angry-looking scar and this tube coming directly out of his back. It was a lot scary when the nurses gave us a list of "things to watch for," that could signal an infection of his spinal cord. Jack came home from the hospital with no restrictions on his activity, except to be a little careful. Home to a two year old brother, a four year old sister, and an eight year old sister. Careful? With four young children in the house? That was like asking for a miracle. Then again, we already had one. We took Jack home and made our family whole. |
| What incredible things God can do! An eleven month old baby has major surgery and in three days is crawling all over the house and standing next to everything. I hold my breath every time Jack pulls up next to the couch or the chair or the cupboard, scared of him falling and opening the incision on his back. But there is, literally, no holding this boy down. I laugh as I watch him careen through the house, intent on his purpose, an eye on the prize. His siblings giggle at him and say his name over and over, so happy that he's home. There are a few challenges. Namely, a strong, healthy, hard-headed little boy who has had momma doting on him every minute of the day for the last three days and now thinks it should continue. He cries when he sees someone else in my arms and crawls over to claim me. It is with relief and joy that I can tell him he needs to wait; Caitlin, Ashley, and Nate need me, too. Nate, in particular, has missed me and snuggles with me, playing with my hair with one hand and murmuring, "My Momma." Oh, how I've missed them. Ashley, who has been a Michigan State fan for the past year, for no other reason than to antagonize her daddy, now pledges her loyalty to the maize and blue. "Because those are the doctors that made Jack all better, Momma." God, you know how much I love her. Caitlin, our oldest, is scared of Jack for the first day. Every time he cries, she looks at him in fear. As if she will see him fall apart right in front of her. I love her for loving Jack so much that she's terrified of losing him. I assure her over and over that he is fine. "God took good care of Jack," I tell her, "He's okay." We change dressings, being careful to keep the incision site and the drain clean. We try to keep Jack away from bumps and falls, as much as you can with an active baby. And we love our life. |
| Sunday night, I put Jack to bed at 8pm. He was perfect. Everything was right. There were no warnings of what was to come. At 1:30am, Jack woke up, crying. I went to his crib and was prepared to give him his pacifier and soothe him back to sleep. But I could already tell that his cry was different. He was lying on his stomach, his legs curled up under him, his bottom in the air. I felt a wave of fear as I reached down and picked him up. He didn't uncurl his legs. He kept them rigid and held up tight by his stomach as I lifted him. I felt my fear grow and I cuddled him against me, his legs taut between us. He continued to cry and I could tell he was in pain. I pressed my lips to his forehead and felt the fever growing there. My chest tightened and I carried him into the living room, where I took his temperature, 102 degrees, and tried to comfort him. Every time my hand would accidently brush against his back, he would scream and then sob. I woke my husband and told him. "There's something wrong with Jack." He swung out of bed and followed us out to the living room where he watched our baby cry in pain. "I'm paging the neurosurgeons," I said, and found the number to call. As I waited for them to call, Jack vomited. I felt panic and terror wash over me as I watched him in my husband's arms. "I'm taking him to the ER, no matter what the neurosurgeons say," I told my husband and quickly got into some clothes and packed a bag for Jack. Still no call from the neurosurgeons and Jack vomited again. I was done waiting. I took Jack out to the car. My husband would stay with our other kids until my sister could get there. I put him into his car seat and a fresh terror began. Jack screamed and arched his back, clenching his hands into fists, cocking his head up and to the side. His left eye closed and, with his right eye, he looked straight at me, begging me to help him. I swept him back out of the car seat and turned, pleadingly, to my husband. "What do I do?," I sobbed, "What do I do?" My husband, scared and helpless, ordered me to go. "Put him in his car seat and drive him to Ingham (the hospital only five minutes from our house). Go! Right now!" Crying, I buckled our little baby back in his car seat. He screamed, clenched, arched, and closed his eye, again. I drove down the residential road to the hospital at 70 mph, wondering if my little boy was having a seizure behind me. We flew into the emergency room and, after the ER doctors heard about his surgery and examined him, things began to move very quickly. Sitting on a chair in the little ER room, holding my son, I heard Jack's doctor give the orders. "Arrange an ambulance transport to Mott's Children's Hospital right now. We'll start IV antibiotics in the ambulance." I sobbed and clung to Jack. I tried to pray, but could only manage the same thing, over and over, "God, please help him. Please help him. God, please help him." |
| Within half an hour, the doctors had started an IV on Jack and the ambulance was ready to go. The ER doctor explained what was happening and assured me we were safe in the ambulance. "These guys will know how to take care of him if anything happens." The EMT's had me sit on the stretcher, holding Jack in my arms. Normally, the trip to Mott's takes almost an hour and a half. In the ambulance, it took about forty minutes. Jack slept the whole way, snuggled against me under his blanket. The EMT sat next to me and kept an eye on Jack's vitals, talking quietly with me to keep me calm. Once at Mott's, things slowed down. Jack's temperature was now 103 degrees. The antibiotics he had received were good for twenty-four hours, so there was nothing more to be done, now, but wait and run tests. Blood was taken to run cultures on. They put a bag in his diaper to collect his urine. A lumbar tap was discussed and put on hold. It carried risks, because of the surgery, that the doctors would rather not take. Jack and I waited. My husband joined us mid-morning, looking stressed and fearful. The night and morning had been hard on him, being seperated from his little boy who was so sick. Knowing there was nothing he could do, but wanting desperately to be with us. Jack was being admitted to Mott's, again. We were just waiting for his room to be ready on the 5th floor. They would start an IV, because he wasn't drinking well or eating. He would be hooked up to not only a pulse ox, but also chest monitors, this time, that would more closely watch his heart rate and breaths per minute. He continued to either sleep or cry, screaming in pain when doctors examined his back or legs. I wanted to scream at them. They could see they were hurting him; why didn't they try to be more careful?? The fear was palpable. Overwhelming. I had to be Jack's safe place. To let him lean against me and feel safe, loved, and taken care of. I wasn't supposed to let Jack know I was scared. And - please help me, God - am I failing at that, too? |
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