I’ve hesitated to write this post. Because I’ve been disheartened by news about little Charlotte.
She had to be reintubated on Saturday night.
Last Friday night was so exciting as Maggie and I texted back and forth. I was thrilled to share their joy, emotional at seeing the pictures of them holding their child. But the excitement was not to last.
Early Saturday morning, concerning texts began coming in.
Sam and I were spending the day with the kids at a museum in the city. My mind kept wandering to thoughts of Charlotte. I kept a close eye on my phone and checked in with Maggie periodically.
Charlotte was struggling to clear secretions from her lungs. A few hours went by and I checked back in with Maggie.
We went to see an IMAX film so I turned my phone off for 45 minutes. As soon as the movie finished, I checked my messages. I felt my heart sink.
In the end, Charlotte breathed on her own for 30 hours. But she was too tired, too weak to continue. After three open heart surgeries and almost 5 months of intubation, her lungs just couldn’t keep up with her body’s demand for oxygen. So on Saturday April 17, at 6:00pm, the PCICU team intervened and the ventilator began breathing for Charlotte once again. After a long Sunday, it was determined that she needs a tracheostomy.
Charlotte will have surgery again this morning. Afterwards she will be sedated and paralyzed for the next week. They made sure to enjoy long snuggles with their baby yesterday. Last night, Maggie wrote a beautiful post on their Caring Bridge site:
“Tomorrow is a big day. We cannot wait to see our little girls whole face, with no tube or tape covering her cheeks! We cannot wait to pick her up. Play with her on the floor. Put her in a stroller and go for a walk. Tomorrow is one step closer to home. As hard and daunting as this step forward seems, it is what’s best for Charlee.”
There are times I wonder where God is in all of this. Is He trying to break them? Are Maggie and Tim asking too much? For their child to simply breathe? That doesn’t seem like a big ask to me. Surely the earth will continue spinning if this precious baby breathes on her own. So what gives?
But Maggie and Tim are people of faith, trusting in the power of prayer even when they cannot understand the unfolding of events. I think of them often when the days with Becky grow long and I feel worn down by her constant care. And I remember to be grateful because my child is home and Charlotte is not. It helps to have friends who understand the emotional overload that comes with caring for a fragile baby.
“Tim and I have reminded each other it is okay for us to be sad and cry. It is okay for us to be angry and scream. But what we need to be is strong for Charlee. Because every decision we make and everything we do is for our Charlee girl.”
I heard from Maggie again this morning. Her positive attitude came through as they face another day in the PCICU.
I’ve been meaning to tell her that every time I compose a text with the name “Charlotte”, my phone makes a strange auto correct. It replaces her name with “Cheeks”. Which seems appropriate.
Here’s to a successful surgery today, Cheeks!