Wonderful Changes

What a difference 48 hours can make! We were moved to a non-ICU room, and although she's been miserable with a bellyache--up a lot last night until we finally gave her some hefty painkillers-- she's feeling SO much better this evening, she walked not only to the bathroom but to the toy room, PULLING her own IV pole,
and best of all her esophagram cleared her for sips of water!

PULLING her pole to the playroom!

I intentionally left my flowers with the ICU desk for a few extra hours, but a receptionist with a beautiful smile delivered them to our new room and insisted they should brighten our new space. The blooms are opening now and with our family photos on the wall, it's so cheerful in here! Add in a sponge bath for baby girl with a real soap-and-water hair wash, lots of conditioner and gentle brushing out of tangles, and both of us are feeling pretty darn happy.

Can't get enough of these smiles!

So cute in her bath getup!

Last night I spent some time in the ICU common room where a friendly large family from the Dominican Republic shared some of their delicious traditional food with me. I shared with them from my considerable candy stash, and when two tired looking young men in suits entered the room I offered them some as well, only to realize that my nostalgic silent observation that they reminded me of LDS missionaries had actually been correct! Another family had requested their visit, but it turned into a double opportunity. Two wonderful hours later, we'd been visited by two sister missionaries AND received a beautiful priesthood blessing from the elders. I've also had some great conversations with other moms in the hospital and today was asked to share Audrey's story with some visiting Harvard medical students. When things start going this well, it usually means discharge is on the horizon. She's still retching up spit every hour or so, and she really only took one little sip of water when she finally got it, but hey, considering today's progress, I'll take it. The next few days will be all about building strength, getting her gut moving again and up to full feeds, plus likely a swallow study and nutrition consult. We're peacefully snuggling and watching cartoons tonight. Thank you for all the love, prayers and encouragement, everyone. It makes all the difference.

Our cheerful new room!

Finally enjoying toys again! I think she may have found every hot pink thing in that toy room, her favorite color. She put a big hot pink electric guitar around her neck before heading straight for the train table. Then she borrowed a pink toy computer AND a pink stethoscope to bring back to the room.

A little stroller snooze while waiting for the esophagram.

My celebratory salmon dinner tonight in the cafeteria.  Things are looking up, and food tastes better to me than it has in a while.

Big Little Valentine

Still a very grumpy bug, but she's getting stronger every day. She's been requesting the bedside toilet since yesterday, and today PT made her walk (supported) out into the hall for the first time. She sits up in bed for a few minutes at a time and can support her own weight for a few seconds. She's thirsty, and I hate that because I can't fix it. Tuesday can't come fast enough, because if the test shows her esophagus doesn't leak she can start drinking and eating again. We'll finish weaning the final med tonight and that could mean a transfer out of the ICU in the next day or two. Oh, and the insides of that package from my mom and family, priceless. Mom even included sticky tack to put them up around our room.

First Steps Since Surgery!

 Our Valentine from her brother, Aaron.  He made a crossword for her on the back.  
The hidden words are: "Aaron, Audrey, Blankie, Boston, Mom, Hug"

 Family portrait from last November

 Happy memories from her first trip to Disneyland; it's amazing to think this was just a few weeks ago at the end of December.

Having these photos to put up made our room so cheery and bright!

 Valentines from her brothers Gideon (above) and JJ (below)

6 foot tall Gerald Giraffe at the hospital front desk made me smile!

A Different Valentine Celebration

I recently read a wonderful article about the beauty of noticing opportunities to lift those around you and gifting service above "things" at Valentine's Day. I loved this article, click here to read it! Great ideas about how to shift our concept of the holiday to a celebration devoted to kindness. I've been trying to do that everywhere I can here in the hospital, and it's really made for some wonderful experiences.  Then, when I learned yesterday afternoon that Justin had sent me Valentine flowers, I was so excited! What a huge treat! But my initial joy quickly turned to sadness because flowers aren't allowed in the ICU rooms. And then, to my surprise the most beautiful thing happened. I went to the desk to accept the package, and about 12 nurses were there waiting to ooh and ahh as I opened the box. It was a DIY box of wholesale multicolor roses with an empty vase, and soon I was preparing the arrangement with all of my latent florist zeal. One nurse offered to run fill the vase with water, another grabbed me the sharpest pair of scissors to trim the stems, and we all happily chatted as I handled the flowers. The arrangement turned out gorgeous, and they put it on prominent display on the desk. Now everyone passing through those ICU doors, with whatever stress they're holding, receives a moment of color and a breath of spring. My husband's beautiful gift suddenly became a blessing for everyone, and that is bringing me even more joy than if we'd been able to receive it in our room at the beginning. The photos really don't do the flowers justice. Thank you Justin, more than I can say!

February 12, 2016

Well, with the morphine and Versed done, life got less fun yesterday for my little love. Lots of discomfort, grumpiness and malaise. Tylenol and Zofran are our friends. Haven't been able to get her interested in doing anything except tv, not even opening our first mail from home! (Right after this nap.) She won't stand or sit unassisted, not many smiles. But on the plus side, her voice is back! It's a huge help to have her articulate what's going on. Really looking forward to our first visitors this afternoon, when Anna and Tim are planning to drive up from SE Mass, and cheering on our "runner" Valerie Mccormick who's doing her first half marathon today for Audrey in Seattle! Thanks for your sweet package Mom and Justin, I can't wait to open it!

One of her rare smiles.  She looks so cute in the fun hospital gowns from Amy and Aliyah.  Thank you so much! Love you guys!

February 11, 2016

Three things that make me smile today: 

1. Real, healing, deep non-drug sleep. 
2. Her arm restraints in the trash.
3. The very lovely "clarification sketch" from the surgery dept as they answered my questions about exactly what was done to her lungs and what it means for the future. That'll help me explain things to Justin.

 Real sleep.  It's so beautiful.

 Sayonara, arm restraints!  Seeing those in the trash was a glorious thing.

"Respire, avale, beauté" ink on paper, 200k. 

Newest gallery acquisition.

Little Things

Today was full of little things that meant a lot: Ditched the chest tube, made the beds, wrote Valentine cards, consulted with doctors and learned they're planning the esophagram Tuesday, walked all the way out of the hospital to the mailbox and convenience store, washed a week worth of laundry (one load), did a random act of kindness, Skyped with home, had an enormously healing chat with Susan the social worker, was delighted to run into and be given a sticker by little Twisha Makwana, and spent hours upon hours with cartoons and snuggles holding my little girl for the first time since surgery, as she smiled and giggled softly, sometimes sweating and trembling with morphine withdrawals, often cuddling closer into me. I'm dropping into exhausted sleep feeling full of joy and purpose and gratitude tonight.

When One Centimeter Makes All the Difference

I'm so happy to report that since they've pulled the vent back a centimeter, she hasn't had any more dying spells with those insane single digit sats. She's still been mad as a hornet when she comes to that near-awake stage, thrashing and fighting to get the tubes out, but her lowest sat was in the 70s even when she held her breath. They switched her from morphine/midaz to propofol and hoping she feels better on this. Best news is they're finally ready to extubate! I'd be happy dancing more but she still has to stay pretty asleep until she stops throwing "get me out of here! " fits. I miss my vibrant girl so much! And the two friend visits I'd looked forward to this week, for different reasons each just canceled. I hadn't realized how much I was looking forward to their coming, and even though I've tried to take care of myself today, even got a free chair massage at the parent center, after I got those texts from my friends back to back I had an attack of intense claustrophobia and felt like I could hardly breathe. I'd never make it as a spaceship crew member or submarine sailor. Everywhere I look the environment is controlled, buildings and concrete! I need fresh air and I miss the mountain views out the windows at Primary. There is one gorgeous oasis, a garden at the center of the hospital, where there are trees and grass (snow right now) and I went there and had to walk around for a few minutes to breathe and calm down the sensation of living in a box. Ironically, the hospital plans to build on the garden and so far efforts to save it have fallen on deaf ears. Missing people and wide open spaces right now, and very thankful for techno means of connecting to family, friends and all of you!

Annnnnnd we're EXTUBATED!!!!!!!

WE HAVE SMILES!!!

Chest tube to come out tomorrow!!!

Oh yeah, life is getting better.