Lane's Story

by Amy D., Fall 2002

Our precious baby boy was born. Oh, I felt so much relief that he was finally here, September 20, 1998, after a long 36 weeks. As I received a thumbs up from the observing pediatrician, I felt relieved and ready for rest. As I was moved into a private room, my husband went with the baby to the nursery. After 20 minutes went by I was so ready to see my new bundle of joy! No one was around, no nurse, no relatives--it seemed as if I was the only one in the hospital.

A few minutes later my husband, David, came in my room. He had tears in his eyes, a scared look on his face, and he was very silent. I thought he was overwhelmed with all the excitement. A few minutes later my mother-in-law came in the room with the same stale look on her face and still I just thought everyone was exhausted from the long night of laboring. Then the pediatrician who had given me the thumbs up came rushing in. I thought that I was in the middle of a horrible nightmare but I was awake and this unbelievable chain of events was really happening.

Lane was beautiful, with a full head of jet black hair, nicely plump at 6 pounds, 5 ounces, and 19 inches long. A perfect baby, right? Until the frightening moment when they tried to feed him, and he turned blue. Several attempts were tried and Lane turned blue each time. An x-ray machine was brought in and the picture it showed changed our lives. Lane was diagnosed with esophageal atresia and tracheoesophageal fistula (other birth defects were found later).

Lane was born at Mesquite Community Hospital, in Mesquite, Texas. The nursery had no other babies in it, and the labor and delivery floor was empty. When the medical team finally decided to transport Lane to Methodist Hospital in Dallas where he would undergo immediate surgery, David went with him, leaving me behind in the private room with little more than empty arms and tears. Before the transport, they wheeled Lane in so I could say goodbye. He did not look like any baby I'd seen before. There were tubes, wires and machines everywhere. He was discolored and swollen, not the perfect looking baby I had seen only a short time before. They told us we could thouch him before he left, and as we laid our hands on him all we could was cry. Never before had I such despair, having to entrust four strangers to transport our baby to a hospital 30 miles away, without me. All I had was a Polaroid picture of him to cling to.

At Methodist Hospital, Lane was under the care of Dr. Klein, a neonatologist, and Dr. Jeorge Uceda, a pediatric surgeon. On arrival Lane was prepped and taken into surgery. He was six hours old. The surgery, to close up the fistula between the esophagus and the trachea, was a success and Lane was taken to the critical care nursery where he stayed for 20 days. The white crib we had picked out for him was home, empty. Instead, Lane lay in an incubator, with tubes running everywhere. My husband and mother-in-law stayed with him through that first night. Nurses at Methodist called faithfully through the night to update me on his condition. I could not comprehend everything that was going on. All I knew was that I wanted to be there. The next day, I checked myself out of Mesquite Community Hospital and went straight to Methodist to be with Lane.

As I entered the hospital, I had a huge lump in my throat--Was this really happening? Did I do something wrong during my pregnancy? I did everything by the book. As I entered the hall of the neonatal intensive care unit, my heart was beating so fast that I felt faint. I had to push a button on the wall to even enter the nursery where MY child was. Once inside, I had to scrub my hands and arms for five minutes and put on protective clothing before I could enter the room where my child lay. All I wanted to do was hold Lane, my newborn. In the NICU, my breath was taken from me. None of the babies looked like babies, they looked like play dolls hooked up to machines, noisy machines that kept beeping.

And then there was Lane, the biggest baby there. He didn't look like anything I had imagined. He had so many tubes and machines hooked up to him, there was no way that I could hold him, the tears just rolled down my face. I just stood there. The nurse introduced herself, but I couldn't hear her name, I couldn't hear anything. I was numb.

How could I touch Lane, how could I hold him, how could I do anything? Slowly I learned. We spent day in and day out there, setting up camp right outside the NICU doors. My husband never left the hospital, but sent me home periodically to get some rest. We spent every minute with Lane that we could.

Finally the day came and we got to bring him home. As we were leaving, one of the doctors who had cared for Lane told me that even though they had repaired his esophagus, there could be problems in the future. BOY--that was a statement of truth. But after 20 days in the hospital Lane came home! We were so excited.

At home Lane was bottle feeding and doing well. At three months, Lane was hungry all the time, so I decided to add cereal to his feedings. I sat on the couch to give him his first feeding of formula-and-cereal mix, and a minute later I was dialing 911. Lane was blue, not breathing, lifeless. I was in such a panic. You can never prepare yourself for something like that. This episode was the first of several of what we came to call "blue spells."

Over the next six months we spent countless hours at Children's Hospital of Dallas. Lane would have a blue spell and we'd rush him to the hospital, where he'd receive lots of oxygen and undergo test after test. He was not gaining any weight. He was not tolerating his feedings. What could be wrong? Lane underwent dilations, bronchoscopes, and pH probes. He was tested for cystic fibrosis, whooping cough, Down syndrome--all negative. What then, why was he having such a hard time eating and breathing? you can't live without those two things!

By this time Lane had undergone 12 major and minor surgeries. His little body looked like a road map from all of the scarring. Finally, in April 2000, Lane underwent a Nissen fundoplication to see if that would help. The doctors thought that Lane might be aspirating even though the studies didn't indicate it. The surgery went well and soon Lane was able to come home. But two weeks later, we were back at the hospital with another blue spell. The doctors had some more bad news.

They explained that Lane's esophagus was not effectively moving food down to the stomach. As a result, the food was creating a bulge in the esophagus and pressing into the trachea, causing the trachea to collapse. That resulted in the blue spells and pneumonia after pneumonia. The doctors recommended a Mic-Key button. A what? we wondered. It was a feeding tube that would be placed in Lane's stomach, bypassing his esophagus and giving him a chance to grow and mature. My husband and I were not sure we wanted to put Lane through another experiment. The doctors convinced us that this would help Lane gain weight and give his esophagus and trachea a break. So finally we agreed to the surgery and Lane got a Mic-Key button. The post-op period was horrible. Lane was having a hard time breathing on his own. His oxygen saturation rates were in the 80s. Back he went to the ICU.

My husband and I just didn't know what to do any more. We felt lost. This time, when Lane came home, lots of equipment came home too: feeding pump, oxygen, oxygen saturation (pulse ox) machine, portable suction kit, nebulizer, and a vibrating vest. His nursery looked like a hospital room. My husband and I received Doctor 101 classes very quickly in order to take care of our son. The hardest thing I had to do was to stick an 8 French suction catheter down Lane's nose to help him breathe. Lane needed this every 4 hours, along with vest and breathing treatments, and feedings through his new Mic-Key button.

Over the next year Lane remained very ill. He still had blue spells and feeding problems, and he spent months in and out of the hospital. The hospital was our second home. We would joke with the staff and tell them that we owned room 456 and when we were not there we would rent it out to others to make some money. (You have to have a little humor or you will go crazy!)

We'd been told before that Lane had tracheomalacia (a weakening of the tracheal wall, particularly the cartilage rings). After reviewing the last two years, Lane's pulmonologist suggested that Lane's tracheomalacia was severe and recommended an aortapexy. [Editors note: An aortapexy is a surgical procedure in which stitches (sutures) are placed between the front wall of the aortic arch (the part of the aorta that crosses the midline as it leaves the left heart) and the breastbone (sternum). The trachea lies between the aortic arch and the esophagus and all three are intimately attached to each other. By pulling the aorta forward, it pulls the front wall of the trachea forward as well, preventing collapse.]

Again another surgery. But this time the surgery, on Sept. 7, 2001, went great. Lane is post-aortapexy almost a year now and he has had only one hospitalization. We were home for the very first time for Christmas, New Year's, and Easter! We are praying that next winter is as good as this summer has been.

It has been a long three years but Lane is doing great now. He still has his Mic-Key button but that doesn't slow him down and he has begun to eat table foods. He is in a gymnastics class, and when he is not tumbling there, he is running and climbing at full speed at home. In fact, he has mastered climbing our refrigerator to the top to get his own bananas! Despite all the scarring, which will be a bragging tool for him to use when he is older, Lane is going at full speed.

Lane has showed and taught me things I never thought I would be able to do. God has given me a miracle, and has given my husband and me the strength each and every day to take on the challenges. When things were so low and I thought that things could not get worse, God would show me that all things are possible through Him.