The Night that Changed Our Lives

by Deb, Connor's Mom

April 29, 1999 is a day we will never forget. On this day our son began to transform our lives in ways we never could have imagined.

When my husband and I arrived at the NICU that night we didn't know what to expect. The call we had received from his doctor only told us there was a problem with his airway and we needed to come back to the hospital right away. My heart sank and I felt sick to my stomach. The feeling got worse as we walked into the hospital and up the steps to the NICU. Only an hour earlier we had left our eight-week-old son, Connor, to get a bite to eat. When we gave our name at the front desk there was a silence, and right then I thought, "Oh my gosh, what happened to my baby?" I felt like crying but no tears would come. The receptionist directed us to wait in the lounge for the doctors. This really scared me. Why wouldn't they let us see our son? Why did the doctors have to speak to us? What had happened to him? 

After a few minutes, which seemed like an eternity, two doctors shook our hands and introduced themselves as neonatologists. I didn't care who these people were; I just wanted to know if my son was OK. They said that Connor's endotracheal tube had slipped out during a head ultrasound and they were unable to reinsert it. Connor had coded. His heart slowed way down and his oxygen dropped to dangerous levels. They had no choice but to do an emergency tracheostomy right there at his bedside. They performed CPR, gave him epinephrine and saved his life! Honestly, I had no idea what a tracheostomy was, what it looked like, or anything about it. They continued on with the details of what happened, but all I could process was that he was alive.

A nurse came in and told us we needed to prepare ourselves before going in to see him. He would look like a CPR doll, his eyes would be slightly open but he would be perfectly still due to several meds that paralyzed and sedated him. He would have a trach in his neck, which was suspended up in the air over his bed with trach ties. Since it was an emergency tracheostomy, the doctor had just guessed at how long his airway was and the trach was too long! By suspending it in the air they could keep it from hitting his carina. She also warned us that the area around the trach was rather ugly. The desperation of getting the trach tube in left no time for neatness. The doctor had cut a large triangle and stuffed the tube in. The oozing wound was still fresh.

When we walked in and saw him for the first time I couldn't believe this was my child! What had they done to him? When we arrived here just 24 hours ago our son was only on nasal cannula. He had moved from just oxygen support, to a ventilator, to this in only one day. We had so many questions but couldn't process things enough to ask them out loud. There was a large IV tree on either side of him with tubes and wires connecting him to all sorts of pumps and infusion apparatus. The nurse was right about the incision; it was awful! What had they done to his sweet little neck? He didn't look like Connor; he was so still. He had always struggled so much to breath, his chest heaving and retracting with each breath. Now he lay so still and quiet. I looked up at his monitor and couldn't believe my eyes. His numbers were better than they had ever been, and he was so calm and relaxed. It was then that the doubts disappeared and I knew these doctors had given me back my son. For the first time in his life he was at peace.

It wasn't until much later that all the ramifications of this night really hit us. Over the next several weeks Connor would be diagnosed with many different problems and would spend three more months in the NICU. We learned how to take apart and put together a ventilator circuit with all its connections, boxes, tubes and wires. We learned how to troubleshoot problems, adjust settings and fix the various pieces of equipment his little body depended on. We'd practice setting up a ventilator and all it's accessories on a Kid Kart to take Connor for walks in the hospital. Trach care, string changes, trach changes and suctioning would become part of the routine. We'd learn how to deal with emergencies, how to draw up medications, how to insert an NG tube, how to change oxygen tanks, and so many other things! 

But the most important things we would learn were things that would change us forever. We would learn to stick together and unselfishly help each other as a couple; in a way we had never needed to before. We'd realize that our differences were indeed vital to our survival. We'd begin to understand that without a strong relationship with God, we were incapable of making it through even a day without bitterness and anger setting in. We would finally understand just how much our own parents loved us, as they helped us care for our son in such a selfless way. We would slowly learn to accept that our lives were not going to be "normal" anymore, or in any way "easy." We would become very thankful for even the smallest of victories! Most of all though, we would have the amazing opportunity to share our lives with an incredible little boy who was just beginning to teach us what life was really all about.