19th Street Detour- post 6

The oncology nurse, Nurse John came down to get us. He was a big, burly man who handled Sarah with delicate hands. I chuckled to myself as he carefully lifted our tiny daughter. His biceps were decorated with tattoos. He looked like he should be watching the door at a biker bar instead of wearing Thomas the Train scrubs. He reached down to get Sarah and held her as though she were made of porcelain.

“Let’s get you upstairs and settled.” He cooed to Sarah.

We followed him up to the 5th floor, listening to him in our catatonic state. There was a huge STOP sign on the door to the ward.

“This is a clean floor.” Nurse John said. “The kids up here have such compromised immune systems we really have to be careful. No colds, no other siblings and you can’t use the bathroom in the room; it’s shared with the kid next door and we can’t contaminate it with anything.” He handed us a sheet of paper explaining the 5th floor protocol. I felt filthy, germy and infectious.

I always wondered what went on behind those doors with the big red stop sign. Drama, I thought, doctors running through the halls, children screaming behind closed doors. Instead, it was very quiet and very clean. Doors were decorated with bright get well cards and big signs as to whose room it is….Welcome to Ashley’s room, Nathan’s room…it hit me, kids are here for a while.

We walked in our room and laid Sarah down in the crib. The front bars of the crib were down since they needed to treat her and there was no fear of her rolling. Sarah used to roll; but not today. The hospital crib looked like a baby jail. The bars were metal and made a loud clanging sound when locked into place. She looked so small in this big metal cage. I wanted to crawl in with her and cuddle.

I tried to schooch in next to her. “Will the crib hold me?” I asked, trying to sneak a hip up on the mattress.

“Hmmm, probably not,” Nurse John said.

I got off the bed and wandered aimlessly around the room biting my cuticles, trying to think of someway to feel useful.

“Can we feed her?” my husband asked

“Sure, let me get you some formula, we’ll see how she tolerates it.”

Finally! I thought. Some sense of normalcy…feeding the baby; all normal, healthy babies eat. Sarah was going to be just fine.

Nurse John brought in a couple bottles of soy formula.

“She takes milk based formula.” I said.

“Why don’t you give this a try. Soy is easier on sick kids tummies. We use it around here all the time.”

I glanced over at my husband. We had asked our pediatrician about switching to soy months ago due to her reflux. “No, no” he assured, “milk protein is the best. We don’t need to switch her.”

Stupid, stupid, stupid, my husband and I had talked after our doctor’s visit about concerns we had with our pediatrician. We decided to stay with him until Sarah’s six month appointment. I felt that we had lost precious time listening to a doctor who dispensed flippant information. Maybe if we had switched to soy we wouldn’t be here, I thought.. I took the formula, gently cradled my daughter and started to feed her. Sarah seemed to wake up a bit. She took the nipple and slowly began to eat. I breathed a sigh of relief. At least I can still feed her.

Sarah drank two ounces and seemed pretty content. She looked directly at me as her body tensed and gave a loud farting sound. Bill, Nurse John and I looked at each other and started to laugh. Sarah gave a slight, relieved smile.

I looked down at my jeans and saw that Sarah’s little noise left me covered in yellow baby poo. “I could be wearing these clothes for a while.” I thought. I set Sarah down, cleaned her up and then cleaned my jeans off. Funny, a couple of days ago I would have been a little disgusted by being coated in poo, now it was just part of the day.

I remember reading a book when I was a teenager about a 19 year-old boy who had leukemia. His mom was donating blood one day when she noticed the woman by her side had poo on her crisp, white pants. When she pointed it out to the woman she said “honey, when you’re in the leukemia ward, your life is covered with shit.”