The Worst Day of My Life

It was October 8, 2010. Nearing the peak of 3 AM my wife is finally in active labor. The doctor was at the end of the bed waiting for our son to make his appearance. The epidural had long went silent and my wife was in pain. She pushed as hard as she could when she felt a large contraction. Ultimately it became fruitful and our son entered our world.

He was covered in a white film with little blood covering his naked body. The doctor joked when I mentioned the size of my son’s package saying, “Dad, it’s not genetic.” The doctor tickled my son’s feet in efforts to make him cry out, but nothing came. They immediately took him to the warming table and rubbed my son’s body with a warmed towel to try and wake him up. His skin was still pale as they wiped away the film that covered him. He had his eyes shut and was barely breathing. I looked back at my wife as she was trying to dodge the nurses that surrounded our son with her field of vision. I smiled at her, trying to give her faith that everything would be okay.

A moment later, they told us that he needed oxygen and they rushed him to the nursery. He was born at our local hospital, and they didn’t have a neonatal intensive care unit. They only had a nursery where all babies went when the mother requested it. There was no request for him to be taken away. I looked back at my wife and looked toward the door where they took away our son. I was stuck, not knowing whether to comfort my wife or go with my son. We had two children in the waiting room, wanting to see their little brother.

The doctor was focused on my wife as she told me she was okay and to go find out what I could from the nurses. Hyaline Membrane disease is what they called it. James’ lungs were affected and the little hairs that help push out liquids during aspiration fail to do their job. They are slicked down like glass allowing anything to enter. His lungs were sticking together because of this and he was put on a CPAP machine to help keep his lungs inflated.

I was devastated that something like this could happen to my son. The doctor told us that being 4 weeks early wasn’t a big deal because the latest ultrasound showed his lungs to be perfectly healthy. Unfortunately ultrasounds cannot show hyaline membrane disease. My wife was bed ridden for most of his stay in the nursery. The day she was allowed to go back was a day and a half later. We knew he would have an extended stay, and they were letting us know what was going to happen. More family came, and I felt obligated to allow them to see James. The prognosis was good and they expected him to be out of the nursery in 7 days. However, we still couldn’t hold him.

It was while I was letting our family see him that the worst few minutes of my life happened. My wife’s aunt came running out of the nursery and into the waiting room where I was talking to other family. “Something happened. You need to get back there now. He’s not breathing.”

Everything stopped in the world at that moment. I ran through the closing nursery hallway doors while bumping into one of them. I staggered towards the nursery windows to see all the blinds shut tight. They were always open, but now they were not. A woman had just left the nursery and the door slammed shut behind her. I was locked out. The only way in was for someone to let me in and the nurses weren’t opening the door. I ran to the desk and found no one there to let me back to see him. I could hear the faint solid beep of a heart monitor in a flat line. My heart deflated.

I ran back to the nursery door and pounded on it as hard as I could. A man opened the door a sliver but not enough to see his face. “Is that baby yours?” he asked me. I nodded with tears running down my face. My baby was dying and I couldn’t see him. The man opened the door wide and I could see tears on his face too. Several nurses were lined around my son’s bed. His oxygen tubes and hat was dangling off his makeshift bed. They were working on him as I approached, my wife crying by herself with no one there to comfort her.

I wrapped my arms around her as the nurses did their jobs to try and bring him back. My wife explained to me that they were checking his vitals and the monitor showed nothing wrong. It was at the exact moment a nurse was checking his lungs with a stethoscope that she found no heartbeat. We later found that heart monitors are actually several seconds behind, especially for infant monitoring. The nurse felt my son’s lung collapse as the pressure from the CPAP caused a pneumothorax (a whole in his lung).

They inflated his lung back by giving him a chest tube and started working back on his heart. He came back to us. He was only without oxygen for a couple of minutes yet it felt like hours. They called for a life line to a hospital that specialized in infants, Riley Children’s Hospital. They couldn’t helicopter him in, so we had to wait for a life-line ambulance to come stocked ready for a portable neonatal unit.

As they wrapped my son up as best they could to a gurney, we were told by one of the life-line nurses the list of things that could happen. We had to agree to them before they could take him, and one that stood out the most was possible death. My son had already defeated death once with the help of a special nurse who God placed there at the right time. We agreed and they rushed him off.

I was planning on leaving my wife at the hospital because she had not been released yet, but her doctor was there that night and released her so we could both be with our son. We left it to our family to figure out sleeping arrangements for our daughters as we packed and left to take the 45 mile trip to see our son again. The ambulance beat us by about 20 minutes, but we rushed up to the NICU as fast as we could. My wife was still in pain from laboring our son, but she kept the pace up.

We waited for hours for him to become stable. It was nearly midnight and almost everyone was asleep in the NICU waiting room. People lived in the waiting room. We saw suitcases, blankets, pillows, and people strung all over it. It was our new home for several weeks while our son fought his way back to being healthy.

It took James 3 weeks to be healthy enough to come home. He went from being in the worst possible scenario at Riley (The ECMO station where they run a full heart and lung bypass) to being ready to come home in 3 long exhausting weeks. They were unsure of the outcome when he arrived, but they were the nurses there were by far the best we’ve ever met. They took care of James like he was their only child there.

After a week and a half there, he was running out of blood for tests. Little did we know, babies cannot produce their own blood supply until they are a few months old! The blood transfusion they gave him was the work of God. One day after the transfusion and they were able to lower his breathing tube to a lower rate. Three days later, he was off the breathing tube. A week later, he was able to be fed for the first time by feed tube. A week and a half later, he was in his car seat test, ready to come home.

James is now 2 years old and is a very rambunctious child. He has PDD-NOS, Auditory Neuropathy, SPD, Chiari Malformation, and general muscle weakness in his core, however he is perfect in our eyes. Never would we have imagined going through everything we have but looking back now, I wouldn’t trade ANY of it for another child.