It’s been a hard day. For no particular reason. Just life stuff.
But then Maggie sent me a picture of Cheeks. And my whole day changed.
I haven’t posted about Cheeks in awhile. I should mention that I always check with Maggie before I post any pictures or text messages. When things are touch and go, or when Cheek’s has a bad day, well, that isn’t the time to post on her progress. But today was a good day. And the perfect time to update on their situation.
Let’s review the genesis of her nickname. It’s my phone’s fault. Or perhaps it’s genius. Because when I finger swipe a text to Maggie, “Charlotte” auto corrects to “Cheeks”. And the name fits this little heart warrior perfectly. Maggie likes it. So do I.
When we last left Cheeks, she had recently been extubated. She held her own for 30 hours. But then she ran out of steam. After three unsuccessful attempts to extubate, it became clear that Cheeks just doesn’t have the endurance or strength to breathe on her own. So Maggie and Tim made the difficult but necessary decision to place a trach. Cheeks had the surgery on April 22, just two weeks ago. Everything went well.
Maggie and Tim were excited to see their daughter’s full face. It was the silver lining to a difficult decision that has significant implications for their future.
For the first week after the surgery, Cheeks was paralyzed and sedated. As her medications have been weaned. Maggie and Tim began enjoying the little things. Like a better view of her face. Or a new hair style.
I had a chance to visit with Maggie last week. Becky had just finished a long appointment with the Heart Fab team and lots of testing.
The sun-splashed skies provided the perfect weather for an outdoor visit. Maggie held Becky as we sat in the children’s garden and talked.
Visiting with Maggie is always one of the highlights of my frequent trips to hospital clinics. And following Cheeks helps me deal with my own version of survivor’s guilt. Because I am home. But I frequently think of those children and families who are still living in the timeless vacuum of intensive care units. I remember the babies in the NICU, living in incubators under glowing lights. I think about their nurses and the teams of medical professionals working in a swirl of constant motion for incremental gains.
I think of the PCICU team and the Heart Fab gals, many of whom are like family to me now. These people work long, hard hours for more than a paycheck. Their dedication is nothing short of heroic. When I have a bad day, like today, my perspective quickly comes into focus Any parent with a hospitalized child would trade places with me in a heart beat. Suddenly, Becky’s care seems almost trivial. Most days, it’s monotonous and constant. But I am blessed to be doing it. To see her growing and thriving. At home.
So, when I receive a text like today’s from Maggie, I cheer and share the good news. For today was a day for smiles.
A simple smile. But one huge step for Cheeks. I find myself imagining a future with Becky and Cheeks playing hide and seek, or blowing bubbles, or eating popsicles. A future full of giggles and laughter.