I haven’t been sleeping well. And by that I mean I haven’t been sleeping hardly at all. We’re still on somewhat of a feeding schedule over here, so there’s that, but even more I wake up multiple times in the night to frantically look at the glowing numbers on our pulse oximeter which tell me how fast Lydia’s heart is beating and whether she’s getting enough oxygen. Then I usually get out of bed to see if the cannula is in her nose because she’s ALWAYS pulling it out, despite our best efforts to prevent that. Backstory I didn’t tell you: We weaned her completely off the oxygen in the hospital, actually, but she crashed hard. It wasn’t something the monitors could tell us was happening. My mom gut + the Spirit kept persistently telling me things weren’t right with some symptoms she was having, even though, as the Drs repeated multiple times, “Her numbers look good!” They ordered an echo “if it will make you feel better,” and it was that extra follow up echo which showed what the monitors couldn’t: that she had crazy high pulmonary hypertension that needed to be treated immediately with oxygen and medication. So, now we’ve been home a month and while it’s gotten better, I still don’t sleep. Because the mom stress is real. This is all just to say that it’s hard. Having a child with critical care needs is hard, although I wouldn’t trade her for anything in the world.
So this is a “here’s to the light at the end of the tunnel” kind of pic. Because creating pretty things is my safe/happy place. And because remembering to trust the light and count the blessings while walking in the dark is everything.
