Twenty Minutes Can Feel Like Forever

Tulla is truly one of the happiest, most joyful babies I know. People comment on her smile everywhere we go. If I had experienced half of what she's been through, I don't know if I could still have that big of a smile. She is a wonder.

Because of her cheery disposition, when she gets upset without a visible cause, my anxiety goes way up. My adrenaline is high, and my fight or flight is on full alert. I know babies fuss, obviously. They get upset. There are plenty of explanations for their tears.

But last night Tulla woke up screaming, and snuggles didn't fix it. If she were a normal baby, I would start by checking basic needs. Is her diaper dirty? Is she hungry? Is she too hot or cold? It's not necessarily that simple with her, though.

My first reaction is - how is her breathing? What are her oxygen levels at? Did I miss a medication dose? Does she need her inhaler? How is her G-tube button? Is it secure, or leaking? In those moments, I miss the simpler times of healthy babies. My boys weren't always easy, but they were generally healthy. I feel robbed of just enjoying her with all my worries.

Tulla's oxygen was okay from what I could tell - but the problem is that crying and moving create artifacts on the pulse-ox, so the readings aren't accurate. She was screaming, so she had to be getting a decent amount of oxygen. I took her off the monitor, grabbed her feed bag and pump, and took her to the changing table.

Having a clean diaper usually improves her mood. I didn't think hunger was an issue since she was over halfway through a feed. Cleaning her up did nothing to soothe the ear-piercing screams. I wondered if she was too full, so I stopped her feed early. Still, she cried on.

She wheezed and snorted and generally sounded miserable. What could be the problem? I felt terrible for her. I hadn't missed her reflux medication, but that didn't mean it wasn't an upset tummy. Then I remembered, I didn't give her both inhalers.

I fought the mask over her face, still splotchy and wet with tears, holding it until she had breathed in enough of the medicated air to open her airways. It didn't immediately fix everything. She did finally start calming down.

A clean diaper, stopping her feed, and administering her inhalers had Tulla feeling much more comfortable. That or she cried herself out. Five minutes later, she was snuggled upright on my chest and falling back asleep. The whole experience probably lasted less than 20 minutes, but it felt like an eternity.

The irony of the timing isn't lost on me. She recently passed an overnight home sleep study, which is amazing progress! Her pulmonologist wants to graduate her from having home oxygen and the pulse-ox monitor. She hasn't needed oxygen at night in a while, but the peace of mind with her monitored is so important. Without it, I would have probably taken her to the ER to have her evaluated.

As I lay there, I wondered at the pounding in my chest. It was then that I understood my own anxiety. My reaction and concern over Tulla is so much stronger than it was with the boys. There are so many extra variables to consider in my frazzled and sleep-deprived state.

Today, Tulla is fine. She was probably just a little full and uncomfortable since it was the end of the day. The inhalers did their job of making it easier to breathe. She woke up smiling at 6:30 ready to take on the day! I sit here wondering at how something as simple as a little fit can look so different when your baby is medically complicated. So to all you parents out there, trying your best to keep your kiddos healthy and comfortable, you're not alone.