Reunited

I'm finally with my sweet baby girl! Gave her a very gentle kiss (or 7) on top of her soft head after checking to make sure that was ok. She'll be completely immobilized by meds for at least 24 hours, and heavily sedated for still longer. Her eyelashes fluttered a ton when I came in the room and was asking the nurse questions. I asked them if she could still hear and recognize my voice and they said yes. I don't know whether it was a basic reflex or not, but it made me feel good.

Most Complex Surgery Yet

She's done at last and in the ICU, but they're not ready for me to see her yet. I'm kind of in limbo. Not hungry but should go get food. The surgery was a success, but it was not nearly as easy as they'd hoped and although they did all they could, it looks like she's still in danger of fistulas forming in the future. There was a lot of scar tissue to remove, a bad segment of lung they had to remove, a partial resection of the esophagus to get rid of the part that formed the fistulas and a weird blister inside the esophagus, organs shifted around a bit to optimize breathing, airway was more narrow than they expected, so they did more tacking to the spine than expected. It's complicated, but in the end she has a wide open esophagus and wide open airways for now. Dr J seems to blame himself for not having done a good enough job 3.5 years ago, somehow having caused all this, which is ridiculous. Her anatomy is simply very tricky and does its own thing, and likes to heal in wonky ways. I am working on not worrying about how everything will heal given her history, but not succeeding very well at the moment. Please send prayers to help me let go of these things I can't control. I've been doing pretty well all day, and right now I just want to see her even though she won't look great and won't be awake for at least a day. Drs Jennings and Manfredi are a couple of amazing, tired guys.

All Set

As they say in Boston, we're all set! Today's major surgery will include repair of her two fistulas (unnatural connections between the lungs and esophagus, a posterior tracheopexy (they will tack her trachea onto her spinal column to keep her airways more open), a bronchoscopy, dilation or possible full resection of the esophagus, and checking the position of her G-tube.

 While Audrey had a fun bath, I baked my mom's special chocolate chip cookies to bring to the hospital.

 Eating a chocolate chip cookie on difficult hospital days has become a tradition for me.  This time, with so much unexpected time to prepare, I'm all set to share.

 Princess Audrey and her little turtle Boston are ready to rock this surgery. 

I can't thank enough our sweet hosts, Anna and Tim, who have adopted us into their home for the past couple weeks after Brenda's family needed their space back.  Thank you with all of our hearts, to each of you, for your kindness and generous hospitality.  We'll remember this time for always.

Park Break

A few shots from our trip to the park. We had two beautiful days sandwiched between yuckier weather, made for a nice break!

 We were impressed with this beautiful wooden musical instrument.

 Ring pop on one hand, goldfish in the other, bunny slippers and riding the bike in the house. This photo pretty much sums up our post-outing pre-bedtime slumber party.

And out.

Crafty

What a great day yesterday! Play date with Brenda & co, I cooked my favorite butternut squash apple soup from scratch for Anna and Tim, met a friend at the church to prepare a vocal solo for Sunday, stopped at Dollar Tree for Valentine making supplies, and then Audrey and I stayed up late making surprises for her preschool classmates back home. She was tuckered out this morning, but after her bath she was back at it again in earnest with the stickers and practiced writing her name until she got it just right. Hours later, we have 16 beautiful cards and 8 treat bags all ready to go in the mail tomorrow. She made Anna and I laugh last night as I climbed in the car after the stop at Dollar Tree:

Me: Audrey, you're going to love the things I got to make cards and treats for your classmates! I'm so excited to show you!

Audrey: What did you get?

Me: It's dark in the car and there's kind of a lot of things, so I'll show you as soon as we get home. It will be a surprise!

Audrey: Mom, I'm not really a waiting kind of person. I'm a right now kind of person.

She practiced writing her name over and over, then we did all the classmates' cards first, THEN finally did her very best work to write her name for her special teacher. We love you, Mrs A!

January 26

Audrey has proclaimed for a long time that she is going to be a doctor when she grows up. In the car just now, our sweet hostess, Anna E., asked: "What will you specialize in, Audrey?"

I looked over at Anna and said "well, she's not quite five yet, I think she has a LITTLE more time to decide."

But from the back seat the little pink med school student said, "Wellll, if you watch something doctory, if you watch something that a doctor does, then it kind of helps you know what tools you need and what you need to do with them."

Love is Patient, Love is Kind

Update on Audrey: ICU beds and Surgery are swamped for the next couple of weeks, but we are officially on the schedule for February 4th, and if there's a major cancellation in the meantime we're sort of "on call" and ready to jump in to take their place. I was kinda bummed at first to hear it's even later than I'd thought but I've adjusted to the new plan. Everyone has been incredibly kind. There are some very sick kids needing help at the hospital right now with respiratory viruses and stuff, and two weeks delay is merely an inconvenience for us. We just get a bit longer to hang out with some super awesome people here.

Super fun play date with Charlotte!! Thank you Wendy!!