"My Story…" Monday: C. Fights the C-PAP

Our little girl’s graduation from the ventilator to the C-PAP was one of her biggest accomplishments to date. We were so incredibly thrilled to know that her lungs were getting stronger and her airway was able to start recovering from over a month of having a tube jammed down it. We still knew that there was a chance she’d need to be re-intubated down the road, especially if she got sick, needed surgery, or lost too much weight. Just the act of breathing burns calories, believe it or not, and these tiny little babies need to keep all the calories they can just to grow!

As I mentioned last Monday, it was on a Friday (our son’s first birthday) they were able to transition C. off the vent. She made it through Saturday without incident and we were so excited to go back to see her on Sunday!

When we arrived, I was amazed to see, not the C-PAP mask on her face, but a nasal cannula. This is usually the next step for preemies, after they’ve been on the C-PAP long enough to become proficient at breathing. Once they master that process, the doctors attempt to shift them to the nasal cannula with supplemental oxygen. This requires that the baby breathe entirely independently, but does provide a higher concentration of O2 compared to room air.

C’s nurse informed us that she was doing so well, they had graduated her to 6 hours of C-PAP and 3 hours of cannula in rotation. What fabulous news!

By the next day we had more news…

C. was no longer doing well on the C-PAP. Her oxygen saturation kept plummeting and the nurses would have to rush in to check her. At first we were concerned that she’d had to put back on the ventilator. I mean, what other choice would there be?

Turns out she hated the mask. She’d pull it off her face and hold it away from her skin. As a result, she received none of the pressure AND none of the extra oxygen. And so her levels would drop.

The medical team (not for the first, or the last, time) gave in to her and let her go to the nasal cannula full-time.

And that suited C. just fine. Feisty, stubborn, demanding, contrary, and strong. These words described our little girl before she even hit 2 lb. And, believe me, they describe her to this day.


There will be no “My Story…” Monday next week, but please come back the following week to read about one of the hardest decisions I had to make during this entire journey… and, surprisingly, it did not concern our preemie daughter…
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