12:08pm – That’s the exact hour and minute when Charlotte began to breathe on her own today.
So many of you are caught up in Charlotte’s story that I simply cannot turn in for the night without updating on her progress.
The PCICU team has tried many, many times to extubate Charlotte. She was born on November 30 and, since her birth, she has breathed on her own for 23 hours. Total. The team has worked hard over the last couple of weeks to prepare for extubation. Protocols were put in place to give Charlotte the best possible chance at a successful procedure. Today was the big day.
I’ve been anxiously waiting to hear from Maggie. We texted briefly this morning. I knew then that as soon as morning rounds were completed, the team would gather and begin the extubation.
But I heard nothing all afternoon. I kept looking at a picture that Greta had sent me. She had lit a candle at the Grotto at Notre Dame. The place where my parents were engaged and where I prayed for countless tests and seemingly significant life problems. Greta walked there last night and lit a candle for Charlotte.
I waited and prayed, like so many of you who follow this blog. But I didn’t feel I should follow-up. I know from experience that these things are slow to develop.
As you wait.
Finally, this evening the text came.
And then, I received photographic proof of the big event.
Let’s take a moment to appreciate this picture. And that head of hair.
And I thought Becky had great hair. Well, Charlotte’s hair is epic. Like, if they gave out medals for best in show, Charlotte would win. A gold medal. A perfect 10.
Maggie told me that Charlotte is doing well and holding her own. It has been a long day but Charlotte’s heart is holding on far better than at any time before. Dr. Kristen is a super hero. She is the head of the Heart Fabulous team and a tireless cheerleader for her small patients. Charlotte’s right lung has collapsed a little and Dr. Kristen is pulling out all of her tricks to keep it inflated. How awesome that she is staying the night to keep an eye on Charlotte.
Maggie also shared her favorite photo from the day. A moment 138 days in the making.
138 days of wanting to wrap your arms around your little baby. Waiting for the removal of tubes and lines and machines. I cannot even imagine the longing.
The next 12 hours are crucial as Charlotte adapts to breathing on her own. So while most of us sleep, Dr. Kristen and her team will work throughout the night to support Charlotte. Maggie and Tim will keep a cribside vigil, never wandering far from the child they can finally hold.
Counting breaths they have been waiting to hear.