Parenchymal leak, say THAT 3 times fast

Hurtling toward Oregon with all five kids in tow after a week chock full of commitments and preparations (one of the crazier of which included extending the height of our chicken enclosure to keep them from flying over)! Looking forward to my 20th class reunion this weekend, visiting Justin's parents for several days in NoCal and hopefully helping them out more than hindering as Dad R recovers from knee surgery, and then back to Portland where we will shoot the photographs for my cousin's beautiful Indian wedding. I drove most of the 14 hour trip while Justin managed the busy backseat crew (I had the easier job). Munching on dried apricots and listening to my choir part for the Bach Magnificat on repeat for hours on end--far from boring as that might sound, I'm super stoked--this might be the most melodically complex piece I've ever performed. (Seems kind of fitting given the current complexities of life.) It makes me think of that classic 80s toy that I loved, with four colors of buttons that played tones in a complex sequence that you had to remember and repeat back in order to win. I'm determined to win! (So if you see smoke coming out my ears don't worry, it's just my inner computer crunching though the choir homework.)

Learned more from Audrey's doctors this week about the specific type of complication she has in her esophagus repair site and the unusual surgery they plan to do to fix it. Dr J says it's a parenchymal leak, and he wants to cut out and reform half of the esophagus rather than a full re do, curling the new set of sutures away from the trachea to discourage this from occurring in the future. Because Audrey is keeping her lungs fairly healthy so far, we have their blessing to plan the surgery around our family's needs, which is a huge relief. Right now we're leaning toward January, but still discussing and praying about it the next couple of weeks before putting that in stone. Thank you for your continued love and support!

Make Mine A Super

Audrey was a super champ at the dentist; for the first time she let them do an entire exam on her teeth! Then she amazed me again when I took her to the store afterward to choose some underwear--you guys understand what a big deal it is for little kids to choose which character is on the underpants, right? Total rite of passage. Anyway, more than all the cute little girl characters available, she wanted the superhero ones! My girly girl, Princess of all Things Pink is definitely embracing her mighty side! So instead of Elsa or Dora or Disney Princesses, she's feeling very proud about Wonder Woman and Supergirl. It made me laugh and cry a little because it seemed so perfect that my little superhero knows how she rolls.

Adventures Before Departing

Yesterday, on our last day in Boston for this trip, Audrey was recovering very well from the anesthesia and after a good 12 hours of sleep she was ready for a relaxed adventure in her stroller. We bought blueberries for her lunch at the Haymarket, sushi on the North End for mine, visited the rose garden at the waterfront and caught a ferry to Boston Harbor Islands National Park. On Georges Island we explored an old fort and attended a free classical string quartet concert by the Berklee School of Music (which I'd heard about from a guy wearing a Powells Books t shirt while waiting in line for the ferry). On Spectacle Island, she fell asleep and napped peacefully while I explored the visitor center and then hiked the long spiral around the island to the highest point in Boston Harbor. She woke up in time to enjoy the view with me. The boat ride itself was exhilarating--the perfect weather, the thrilling wind that broke up the heat, and the smell of the briny sea air all combined to give us such a feeling of freedom from worry. On our way home she saw the horse drawn carriages and asked me so sweetly that we decided to gift her that special experience. We wrapped up the night with a fun dinner out with our wonderful host family, and Audrey has been a traveling champ again today. She was a total nut on the plane, playing very cute games with her infamous "Pink Blankie". Our 3 hour layover in Chicago is nearly at a close and she has been napping peacefully for most of it. One more plane, one more train, then looking forward to resting in the arms of my family tonight and celebrating Aaron's 10th birthday tonight with his special request-- homemade pumpkin pie (made with our own chicken eggs). Feeling more thankful than I can say!

Climbing the spiral path to the beautiful vista at the top of Spectacle Island, the highest point in Boston Harbor, and historic town-dump-turned-gorgeous-nature-preserve.

Difficult News in Boston

Please keep our family in your prayers. Audrey has a rare complication called a recurrent fistula (a new tube that has grown connecting her esophagus to her airways), and will need major surgery very soon in Boston, basically the exact surgery we did 2 years ago that was followed by 7 months of complications. I am stunned and heartbroken, but thankful for her wonderful doctors and nurses, and for the support of family and friends.

This morning after being a total sweetheart in our crack of dawn pre-op, she woke up from anesthesia screaming in pain from the IV in her arm that had needed to be placed by ultrasound--exactly the same spot they tried to give me an IV when I was giving birth to her, for those who've read her birth story--and the nurses were frantically trying to get me to come comfort her just at the same time Dr Manfredi had sat me down to break the news. There was almost no time for questions. (Drugs first, questions later.)

Audrey got morphine and settled down in my arms, devoured two popsicles and loved the shiny bead necklaces they gave her as a prize. She has been feeling great ever since the IV came out, even felt well enough for us to visit with sweet friends in the hospital whose son just received a kidney transplant, and then had a blast playing in the playroom while I visited with our friend Deb, the childlife specialist for the EA family wing. Audrey fell asleep for the bus ride home, we took a long nap, and our sweet host family shared their dinner with us and even gave her strawberry ice cream.

Audrey hugged me tonight and said, "This was a very good day." I was floored by her beautiful example, and I know she's right. Counting our blessings tonight.

My fabulous 3.99 custom omelet from the hospital cafeteria this morning, full of vegetables and feta, that I managed to get two bites of before the doctor arrived to talk to me. Don't worry, it was still delicious cold, two hours later. I was blessed to have an awesome nurse who gave Audrey a Dora video and gave us privacy and time so I could finish my breakfast.... lunch.

Bacon again!

Bacon is on the menu again thanks to the mesh feeders we luckily still had (for the hundredth time thank you D Kamaile Hiatt). Audrey is feeling so happy and agreeable that she was answering affirmative to everything, and the kids were in stitches asking things like,
"Do you like bacon more than Daddy?"
(Mmm hmm!)
Except one.
"Do you like bacon more than ice cream? "
She shook her head emphatically.

Almost Three

Little Audrey was speaking in full sentences with a very grown up vocabulary yesterday, and Justin playfully asked her, "How did you learn so many words?" She turned to him with big sincere eyes and said, "I'm almost three. "

So there you have it. 

She loves helping me give her medicine through her G-tube, and opening and shutting her little second "belly button" when it's time. She's been having a pretty rough time eating by mouth the past couple weeks, getting lots of food stuck in her throat sometimes. When it comes back she says "Sorry Mommy" and looks so chagrined, but we reassure her that it isn't her fault and remind her to take little bites and chew lots. At other times she does OK, and we don't know why. All of the recent tests have shown her esophagus is open, but the lack of normal muscle action in there may simply be the cause of her difficulty eating, and a problem we'll have to deal with as a part of her normal life. Justin told me yesterday that he has noticed a difference when we pray specifically for her to have help swallowing, during grace for that meal. We've gone back to nightly G tube feeds and she is probably getting at least half of her daily food at night again. It has been a quiet stress. I've been doing a lot of the Good Mom/Bad Mom routine with the older kids--you didn't even know that was a thing, right? Yeah baby, I'm owning it. With such a nice dad around, somebody has to keep them in line.

But I just received a BIG surprise--someone nominated our family for free tickets to the Comic Con Fan Xperience this Thursday, and we were among the ones chosen! I am so excited to take the kids and Justin to this fun event! The kids don't know yet. What a treat. Thank you to the friends who nominated us and to Nick at Salt Lake Comic Con for this generous gift! We'll be excited to see actors and props from a lot of our favorite geeky fandoms, like Star Wars, Dr Who, and Star Trek the Next Generation. There's an entire tent just dedicated to kid stuff and I imagine a big chunk of our time will be there too. Fun times.

The Poke Never Bothered Me Anyway

THIS brave girl was very relaxed at the hospital lab and did not cry when they drew her blood for tests to see if they could find a cause for her seizure of two days ago. She watched them put the needle in and take the blood out, and barely even winced. She was so excited to get her pink bandaid and for Daddy to rent Frozen as a reward for this SUPERGIRL!!!!