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 explanati

Has it been another week already? Crazy how time flies when you've got four kids running you ragged and tons of wacky weather. All week, I was listening to Tulla's breathing. I gave her an inhaler every four hours while she was awake, and the steroid inhaler twice a day on top of that, hoping that it would help her sound better... But of course, she doesn't sound better. My stress level still goes up, because this is what she used to sound like before we knew it was bronchiti

Do you ever have those days when your mind races a thousand miles an hour when you weigh all the variables that could impact the outcomes? That's where I'm at. And it's exhausting. I've started this post a couple times... but it hasn't seemed quite right. Up until now, I've written about past experiences. This is the first time I've made a post in real time, which makes it hard to know what to say and organize my thoughts. Poor Tulla is teething like crazy, so she's a drooly

I left you with the results of the triple scope and the start of a feeding plan. Progress with Tulla doesn't look like a neat before-and-after. It's baby steps, lots of waiting, and trusting your instincts when answers aren't coming fast enough. Our first baby step was a spoon dipped in my milk. Tulla is smart as can be, so it was no surprise that she quickly understood opening her mouth for a "bite." She was sitting tall and proud, happy to be learning. A week later, I gave

If you've made it this far, or if you're just joining us now, welcome and thank you for being a part of Team Tulla. I've gone through her history from birth to seven months. It's wild how much can happen and how much things can change. I've been juggling appointments, sometimes several a week, trying to figure out what needs to be done. The time has finally come for her to meet with the aerodigestive team for her triple scope. Just to refresh your memory, the second time Tull

Not wanting to lose momentum on Tulla's weight gain, I kept up a rigorous feeding schedule of 4 oz every 3 hours. Night and day. Day and night. I was sleeping so little that the days blended together. Sometimes during her night feeds, I would find myself nodding off and giving us both a milk bath from the open syringe system we were using. Given that we had repeatedly gone to the ER for breathing-related issues, we invested in an Owlet monitor (if you want my full opinion of

Tulla had a new team of doctors. While the ER can test for the most common viral illnesses, this children's hospital can test for the common cold. Surprise! Tulla actually was sick. Her cold was masked by her normally loud breathing. It wasn't even something I recognized. At this point, she always sounded junky, like she needed to clear her throat. I hadn't thought twice about that or her cough. I had been told that was all just reflux. The doctors might have been ready to ch

Ever feel like you're fighting as hard as you can to end up right back where you started? When Tulla was five months old that's what happened to us. The colder winter weather was starting to get behind us as we approached spring. She woke up on a Saturday afternoon from a nap and sounded terrible. My mama instincts had me on high alert. It wasn't that she was sick. Her breathing was usually loud and congested. It was the way she sounded like she was fighting for every breath.

I really thought that once all the wires and probes were off Tulla’s head—and we were finally home—everything would settle back into normal. I thought she’d go right back to nursing. Tulla loves to prove me wrong. She was clearly hungry. She rooted, fussed, asked to eat… and the second I tried to nurse her, she’d fall asleep. Then she’d wake up ten minutes later acting starving again. She was spitting up constantly, which didn’t make sense, and I remember sitting there for 45

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