A Train Ride to Holland - Part 2

By ExoticHippieQueen ©2011

In the days that followed TJ's birth, I found that I was going to be operating in a postnatal world completely unlike my two previous son's births. There was no family to greet me, no one to make a meal for me or help with the kids. Jeff was there doing what he could do. A few friends sent flowers and a bottle of red wine to "build my blood back up", but under the special circumstances, no one really knew how to act, what to say or do for me. The cards that I did receive were worded carefully......"thinking of you at this special time". I really did appreciate any and all gestures of concern, anything that would comfort me in this comfortless time. A very special card included a cut-out newspaper article from a Dear Abby column in which she described how having a special child was very much like a train ride to Holland. You are planning a trip to Paris, feeling the excitement of the upcoming day of departure, you have studied French, read all of the brochures, and you are prepared, ticket in hand. You get on the train. But.............when you get off the train, nothing is familiar. Instead of Paris, somehow you have ended up in Holland. The landscape, the food, the people, everything is very different. Despite the fact that your trip ended in a location entirely unfamiliar to you, eventually you learn the language, start to appreciate the food, admire the beautiful tulips and windmills. In the end, you realize that even though you did not end up at your expected destination, you have come to enjoy and appreciate Holland for its' own inherent beauty.

Phone calls to the hospital were frequent and provided us with bits and pieces of information about TJ. Two days passed, then three, but he did not seem to be approaching death as predicted. Instead, he was doing quite well, feeding normally, his digestive system was intact and functioning, and he was the one and only baby in the nursery, receving all of the attention of his nurse, Sally. Arrangments were made to have him baptized right at the hospital. Sally was his godmother, such a loving woman who gave him the care that I could not for a few days while I recovered physically and emotionally.

My first visit with TJ was such a bittersweet moment. This little stranger had brought us such a shock, and here he was. I examined him from head to toe, carefully running my hand over each of his hands and feet, his face, pouring mother love into him, seeking an explanation for these mistakes that I had made. Isn’t that the first thing we mothers ask, “Does he have all of his fingers and toes”? The answer was no. I fed him his bottle, rocking him, just as I had done countless times before with the boys, but this time it hurt. I hurt for my precious baby who did not deserve this, for Jeff and I, just a terrible ache. We still had no answers, but what we did have was an appointment with a geneticist in Miami in three weeks, three long weeks. The hospital discharged TJ to our care and God’s hands. He slept in a bassinette at the foot of our bed, but for me, sleeping was not an option. If my movement through the night had been videotaped, it would have shown me leaving my bed over and over, leaning in to check TJ’s breathing, terrified that he would die right there in our bedroom. As the weeks passed, “T” ate well, slept pretty well, just about as you would expect any baby to act. I began to relax just a bit, but not too much. We still knew almost nothing.

Jeff and I sat restlessly in the office of Dr. Behnke, a highly respected geneticist, at Jackson Memorial Hospital in Miami, waiting for the door to open, literally and figuratively. This man would have the answers we absolutely had to have about our baby and his future. Suddenly, the door opened abruptly and Dr. Behnke breezed into the office, greeting us happily, barely glancing at TJ. Once he sat down and looked into T’s little face, he announced so matter-of-factly, “Yes, he has Apert Syndrome. He will have to go through quite a few surgeries, but he will be fine.” Wow. That’s it? This is what we waited three weeks to hear just put so simply? Dr. Behnke went on to explain what Apert Syndrome is (www.apert.org), as well as what types and how many surgeries TJ would need to have. He basically told us to relax because it was going to be a long and rough road that we will need to gather our strength and endurance to travel. While we were somewhat relieved, at the same time, the thought of our baby having to experience surgeries was heartbreaking. Even worse, Dr. Behnke was going to send TJ’s information over to a pediatric plastic surgeon who would do his first surgery, a craniofacial resconstruction to release the suture lines, scheduled to be done when he was only 10 weeks old. Ten weeks? Are you kidding me? He’s so tiny, born 3 weeks early and only 6 pounds, he had lost a few ounces and gone down to 5 pounds, 12 ounces. Now he was a bit larger, but not much. TJ was having problems because formula came out of his nose when he was feeding due to a partial cleft of his soft palate, yet another complication from having Apert Syndrome. The cleft could not be seen while looking at TJ’s face, as in a regular cleft palate, because it is located at the back of the throat. Add another surgery to the list.

Days before TJ’s scheduled surgery, I became weepy and resisted the idea, but really there was no choice. Without it, T’s brain would have nowhere to grow, causing his head to grow tall, unable to expand out to the sides normally because of the fused suture lines in his skull. Many years earlier, at the turn of the decade, all children suffered this horrible fate, first becoming retarded by the stunted growth of their brains, and then dying. Now early intervention surgically opened the suture lines allowing the brain to develop normally. My parents drove down from Chicago to stay with the boys, while Jeff and I made the trip to Miami with TJ. I took a picture of him just minutes before they were to come in and escort us to the surgical wing. Even now, my eyes fill with tears, remembering the moment that the masked nurse put her arms out for him to carry him into the surgical suite. He was sleeping in my arms, this tiny bundle, and they were going to stick needles and knives into him, cut open his tender, nearly newborn head, barely released from my womb. I kissed him, trying not to think of whether I would see him again as I watched the nurse turn with TJ in her arms and disappear through the suite doors……….then turned into Jeff’s arms, sobbing. We stood there in the middle of the hallway, clinging to each other, completely lost in the pure helplessness. We had eight to ten hours to pass, waiting. These are the moments of our lives, part of the memories we will always carry with us through all of our days……………

7/20/11

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