"My Story..." Monday: The Darkest Day

Saturday, January 7th dawned like most winter days in the Midwest- cold and windy. I was excited for a couple of reasons. Since it was the weekend, my husband was off work which was a welcome change from the long days he'd been putting in. I was also happy because my brother and his wife and two daughters were due to arrive around lunchtime. We live in the same state as all of my in-laws, but up to this point my mom was the only one on my side of the family who had met my baby girl. She was two weeks old.

The previous evening, my husband stopped by the hospital on his way home from work. He walked in the NICU module to visit C. and she wasn't there. She wasn't in her spot. A nurse quickly directed him to a small room in the rear of the module. He was told she was in isolation. Apparently our little girl spiked a fever and started requiring slightly higher ventilator settings shortly before his arrival. Knowing she was sick, they wanted to keep her apart from the other struggling babies. Despite all this, they seemed confident that blood tests and chest x-rays would soon reveal the nature of the illness and they'd be able to treat it. It really just seemed like another little bump in the road.

We had just given A. his morning bottle and were outlining the day when the phone rang at the Ronald McDonald House. I answered it.

"Mrs. S.... this is Brenda, the nursing shift supervisor. I'm calling to tell you your daughter's not doing well. You'd better get down here."

I stammered out that we'd be right there, hung up, and turned to my mom and husband with panicked eyes.

"Go," my mom told me, "I'll stay with A. and be here when your brother comes."

My husband and I tore out the door. We drove the short distance rather than walk so we could make better time. I was still recovering from surgery and I wasn't too quick on my feet.

When we finally made it into C's isolation room, we saw she was on a new type of ventilator, an oscillator, which is a high frequency machine that made her little chest rise and fall at a very high rate. She was sleeping and, to be honest, didn't really look all that different from how she usually looked. But one look at her nurse's face and we knew that everything had changed.

"You have one sick little puppy," she told us quietly. She went on to explain that a chest x-ray had revealed pneumonia. They also knew she had some type of bacterial infection and the lab was working on narrowing down what type so they could deal with it. They were concerned because she had had little to no urine output and her blood pressure was dropping dangerously low. She was on medication for that too. They were keeping her sedated so that all of her energy could go toward healing. Though she had been receiving breast milk through an OG-tube since her third day of life, they had to discontinue those feedings and rely on nourishment through IV liquids.

I felt helpless. I couldn't hold her. Couldn't even touch her. She couldn't even use the milk I diligently pumped for her. My husband and I stood by her side silently. We didn't even really talk to each other. Occasionally, I would sing softly to her. Most of the time I couldn't make it through a song without tears catching in my throat.

By late afternoon, things had gotten worse. We had learned that C. was positive for MRSA. The infection was in her blood and the doctors were worried because that type of infection is hard to treat. It is resistant to all penicillin-based antibiotics. Yep, this is one of those "super-bugs" you hear about.

Her breathing grew more and more labored and her oxygen levels kept dropping. Normally, they liked to see the preemies' O2 levels above 85. The neonatologist on duty told us we'd have to settle for 75 or above because they couldn't get them any higher. "We accept those levels for heart babies; it's all we can do for your daughter right now. If we go any higher on the vent, we'll cause irrevoccable damage. If she doesn't make a turn-around soon, there's not much else we can do..."

For well over an hour, we watched a team of doctors stand just outside that little isolation room, staring at her monitor. They just watched her numbers. It occurred to me that, at that time, there was nowhere these doctors were more needed. That thought terrified me.

My mom came over with my brother and his family that evening. I was able to show off my poor, struggling baby girl to her uncle and aunt, though not her cousins. Not only were they too young to be allowed in the NICU, I wouldn't have wanted them to see her under the circumstances. My family went to the lounge and my husband and I resumed our vigil by her bedside.

Late that evening, our nurse asked if I wanted to change her diaper. I jumped at the chance because it would be my first opportunity to touch her all day. I had watched these changes all day long and it was always devastating to see the diaper get weighed and learn that, no, her kidneys still weren't working properly. But I happily took on the task. As I removed the teeny tiny diaper from her little body, I turned to the nurse with wide eyes...

"It feels... heavy."

I eagerly placed it on the scale and, with her nurse by my side, we realized that C's kidneys were working just fine. Within the hour, her oxygen levels looked better and they were able to wean her settings slightly. A prescription for Rifampin was brought in to try to fight the MRSA. The neonatologist wrote orders to start cutting down on her blood pressure meds.

It was now pitch dark outside.. but for us, it felt like we had finally emerged into the light.
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Next Monday, I'll write about the next couple weeks and C's fight to recover.