Falling through the cracks

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 that, I can make a separate review post). They say not to use the Owlet as a medical device, and after using it for a while, I understand why. It would alarm if her oxygen dropped below 80. Her levels ideally shouldn't drop below 90.

Despite everything, I was determined to keep Tulla safe. I spent a lot of time anxiously watching her number on my phone and debating if she needed to go back in when she hovered in the 80s, not quite setting the alarm off.

If I held her at an incline, her numbers were better. So I did what any parent would do and slept upright so she could be cradled in my arms. I know, safe sleep is supposed to be baby on their back in an empty crib. But this was safest for her.

I talked with the nurses at the hospital to see what we should do since her oxygen levels were still an issue most nights. The problem was that Tulla had been seen inpatient, and while I had outpatient scheduled, the specialists hadn't established care with her yet. Nobody could order anything without having seen her first. It felt like we were slipping through the cracks.

Usually, a primary provider would order those things, but the children's hospital was in a different network from her pediatrician. Miraculously, they were able to find Tulla an appointment a month sooner with the pulmonologist.

I just had to keep her out of the ER for another week. I definitely pushed it some nights. Maybe I should have taken her back in. I just wanted us all to be home so badly. I didn't want to spend another week in a hospital room.

The day finally came for her pulmonology appointment. Getting established with the lung doctor would be such a relief.

Well, we were only 10 minutes down the road when I was pushed off the road by a semi truck. I was alongside the trailer when it started signaling to come into my lane, but we were at a bridge. There was nowhere for me to go and nothing I could do except lay on my horn and ride the rumble strip.

I was trapped between the concrete barrier on the bridge and the tires of the semi.

It scraped my passenger doors but somehow missed my tires.

This was like the plot of a bad movie.

Tulla was on the passenger side. We just cleared the bridge before it pushed too far into me, and I was able to steer away farther onto the shoulder. If it had been any closer... I hate to think what would have happened. She cried momentarily at the impact, but immediately settled. She waited quietly as I checked on her, unphased even as I processed what had just happened.

I couldn't believe it, and sent a silent prayer of thanks that nobody was injured. I hadn't gone over the bridge into the water below. And Tulla was safe and unharmed.

I called 911 with shaking hands. I could barely dial. While I was waiting for the police to arrive, I immediately called the hospital to let them know I would be a little late. I had to make the appointment though. Tulla needed it. The clinic was an hour and a half away, so it wasn't even open yet, but I had to be there.

My van was still drivable, though there was a giant hole in the sliding door.. I sent a text to my husband and my parents came to meet me so my dad could drive. I was still too shaken up and my adrenaline was pumping. I crawled through the driver side sliding door to move Tulla's car seat over to the door that could open.

We were a little late, but the nurse was so sweet and they held my appointment. They also knew how important this appointment was. Finally established, the lung doctor got Tulla some inhalers and an informal home sleep study. We would discuss a full version if it was necessary after the scope.

The sleep study revealed what I already knew, Tulla's oxygen dropped too low when she slept. I was alarmed to find out how generous the Owlet was. The lowest I had seen was 74, but she was fact 64. Over 10% of the night she was under 90. How scary to hear. How guilty I felt not taking her in all those nights I had been unsure.

Tulla was prescribed half a liter of oxygen and a medical pulse-ox monitor for when she slept. We were still waiting for answers, but at least we knew that she was safe for the time being. I could finally rest without constantly checking my phone or worrying about her oxygen levels. Action was finally being taken towards her safety.

I’m grateful for the progress we’ve made and the incredible care Tulla is receiving. Celebrating the victories along the way helps keep a positive attitude and outlook, regardless of the circumstances. To any parent walking a similar path, remember: you are your child’s greatest advocate. You don't have to wait for their next appointment to talk to their doctors when they need help sooner. Even when you don't know exactly what you need, ask questions. Insist that your child be seen and trust your instincts.

Looking back, I realize how much strength and determination I've poured into this situation. I don't say this like I'm some kind of hero. It's more than I could do on my own. Only by the grace of God have I been able to keep moving forward. I'm so thankful for the friends, family, and prayers that have surrounded us every step of the way.