Living in the hospital

Once upon a time, but not too long ago, I was living in a nightmare.

My husband and I spent a mostly sleepless night in the PICU - uncomfortable and terrified. We listened to the beeping of the machines. We watched the waveforms of her heartbeat, the shifting numbers, and the constant worry that something bad was about to happen.

It felt like being in a fishbowl. The room was small, the glass wall made everything feel exposed, and the air felt thick with uncertainty. Half of the wall was covered with a curtain to give the illusion of privacy, but there was still a space where the nurses could see in from their station. So even when we tried to rest, there was no privacy to speak of.

Tulla was on a little warmer bed, naked and covered in stickers, wires, and tape. So small, so dependent, and still so strong and determined to fight. I knew she needed me to be calm. She needed me to be brave for her. Still recovering myself, I sat in the recliner next to her warmer, watching the flashing numbers on the monitor. The monitors kept track of her oxygen and heart rate, but every time she wiggled or fussed, the alarms went off artificially. The alarm was just as loud when it was a false alarm as it was when it was the real thing. It was like sitting on pins and needles, holding my breath, waiting and watching all night.

By morning, we finally had some test results. No brain bleed,. No illness like RSV or the flu. No heart issues. We praised God for good news. But it didn't answer the real question.

Why did she stop breathing?

What was the cause?

So the cycle continued. More tests, more waiting, more uncertainty. Tulla wasn't nursing great. I've nursed three babies before, so I felt pretty confident I knew what I was doing, but something about her eating just didn't seem right. She was struggling and seemed sluggish, so the nurses kept an eye on her blood sugar levels too.

We were told the first day we would meet with all the departments that would make up Team Tulla, and we did, but it didn't feel like much of a "meeting" at all. We could only wait and watch. Wait for information, waiting for patterns, and waiting to see what her body would do next.

We were told it would be a process of elimination, trying to discover the cause. Monitor for episodes, and pray none happened. If she could go five days without any episodes, we would be in the clear and Tulla would be okay. It was also revealed to us that sometimes babies have underdeveloped systems and just have to grow out of something like this.

At the same time, we started an EEG to monitor her brain function for seizure activity during her episodes. It took several hours to get those probes glued to her head. Her little baby hairs kept getting in the way, and the glue smelled horrible - it made my eyes water. They had to wrap up her head to keep everything in place. Poor Tulla had so many heavy cables attached to her head that she gave up on nursing completely.

I didn't need weight dropping when she was so tiny to begin with, so I started offering her a bottle to supplement the missed feeds. That broke my heart in a whole new way. Nursing doesn't come as naturally as I thought it would all those years ago, before I started having children of my own. It's a learning process for you and your child, but it brings an inexplicable closeness that I was now missing. My post-partum self mourned the loss of that bonding experience. But Tulla was more important than my feelings about how she was fed. And fed is always best.

Every morning was the same - wake up after a restless night of listening to monitors and dealing with at least one episode, meet with the team for morning rounds, and see what plans they had or answers they could provide. There seemed to be some confusion as far as what counted as an episode. Was it an episode when she would hold her breath and her oxygen levels going below 90? Or did it matter if we saw her holding her breath? It only counted if her waveform looked good and stable, but if she was crying, it wouldn't be accurate. So what was an episode? Which moments when the nurses had to check on her or stimulate her reset the clock on how long we had to stay?

Different doctors had different ideas, and the inconsistency made everything harder. We weren't just waiting for her condition to improve. We were also waiting to understand what "improvement" even looked like. My husband had to go back to work, but my mom came to stay with Tulla and keep me sane.

In the meantime, the bottle worked, and Tulla started gaining weight again. Her blood sugar stabilized. We were moved out of the intensive care unit and into the pediatric unit for further observation. Hope started to grow.

We struggled with her latch. She lost weight. She gained it back. She seemed to have more good days than bad. More days without episodes. With the threat nullified, my thoughts turned towards home. I felt like I was coming up for air, and with my mind clearing, I started getting anxious about getting home to my boys. I started to feel so guilty about how long I'd been away.

After one week and countless prayers, we were cleared to go home.