Picnic

It's been a picnic (pretend and real) kind of day! So many, so many fun things today we are BUSHED. After about 6 hours in the 10E playroom painting, play doughing, pretending and project making, plus chasing robots downstairs on our way to get cheese and crackers, chasing bubbles in the garden, pretending to be a mermaid in the fountain, making funny faces while we picnicked in the laundry room, singing Frozen songs on the air in the hospital tv studio, saying good bye to the Prouty garden "just in case it isn't there the next time we come", as we walked back inside she spontaneously ran up and hugged the statue we call Mrs Prouty, and asked me to take a picture as though she is the child whose hand she's holding......because we officially have plane tickets for tomorrow morning!

Pretending to be a mermaid!

"Swirling rainbows and sunshine"

She loved playing with this Cinderella playdough set!

"Thank you Mrs. Prouty!  I love your garden!"

Thank you, Anna

Praying that armies of strengthening angels will encircle my beloved friends the G family tonight. Anna lived a rich life full of faith and laughter, she served generously, warmly and enthusiastically at every opportunity, and tonight she continues her service in another capacity. We named Audrey in part for her, as one of the great women to look to for an example of how to live well. Well done, my amazing friend. I love you more than words can say.

Meeting up for lunch during her visit to Utah on October 1, 2014

January 3, 2015  A rare chance to chat with one of the most beautiful people I am blessed to call friend. Audrey is partly named for Anna.  It was so great to see her and her fantastic family.

Picnic Approaching!

Thrilled to report that Audrey is feeling MUCH better since yesterday afternoon! Not coincidentally, we learned in yesterday's scope that her esophagus looks gorgeous and wide open. Her belly's getting close to tolerating full volume tube feeds again, and a "picnic" to Utah seems very close indeed!

 Thank you for fixing my throat, Doctor Jennings!

Listening to her own heart with the nurse's help!

Hearing on the Prouty Garden

This is an evening I'll remember all of my life. Thank you to the wonderful fellow TEF mom Sally who drove from New Hampshire to attend with me, and gave me incredible moral support today (as well as feeding me twice and setting me up to use the hospital's Seacrest Studio to record my contribution to the Mormon Tabernacle Worldwide Messiah!). After arriving an hour early to sign up and get a seat, we listened to four hours of 3-minute testimonies both for and against the destruction of the Prouty Garden given to a standing-room-only audience, from passionate and intelligent people all wanting to move forward with what's best for children. I don't envy the decision committee, but it was pretty clear to me from the arguments given that other land choices weren't adequately considered. Some famous people spoke tonight, lots of doctors, important scientists, CEOs, Dr Barry Brazelton, it was incredible. Too many amazing comments to list. I was the only inpatient parent, which made it fun to get up when I had to announce my address--the 10th floor of Boston Children's. Here's what I shared along with a couple photos of Audrey; the words are far from perfect, but perfectly from the heart:

This is Audrey. She's 4 years old, and for the past 3 years we've been traveling from Utah to Boston for specialized surgery. She has spent, all combined, nearly a year of her life in the hospital, including these past four weeks. In the past month I've left the hospital building twice; this makes three times. We do share a room with another patient, and we're thankful for that because we are here pretty much alone, away from her Daddy and four siblings. She's not feeling well today, but I'm here with her blessing, because in her words "If they break the garden, I'll be heartbroken."

There are some who say it's worth sacrificing the Prouty garden for the new building, because we should focus on getting more children well and sending them back home to their own gardens. That is spoken from the viewpoint of someone who has never stood where we stand. I'm speaking today on behalf of thousands of patients who are spread across the globe who come here for specialized surgery and treatment. If you could see them right now, this room could not contain us. While we certainly want every child to get well, and we love Boston Children's and support growth, what that argument fails to consider is that some of us are inpatient receiving specialized critical care for months at a time, some patients are even here for the rest of their lives. This IS our own garden. When you are inpatient, you cannot leave. The hospital is our entire world. And in that world, we need this green escape, where the air is open to the wild sky and the trees are old and lovely, where we feel the wide openness of natural green space and those tall yet distant hospital walls protect us from the jarring sounds of traffic. I respectfully submit that no smaller green space or rooftop container garden can duplicate this unique jewel.

Audrey and I have been inpatient nearly a month now recovering from the fourth major surgery on her complicated body. One afternoon the week after surgery, she started having unexplained episodes where she would suddenly stop breathing. After hours of intense caregiving, I suddenly started feeling trapped by encroaching walls everywhere I looked. I started perspiring and needed to escape outdoors--I can only imagine how she was feeling! Going out the front of the hospital would not only have dumped me into a cacophony of noise and traffic, but I would have felt like I was abandoning my daughter. I needed that open feeling that no smaller green space could have given. I ran to the Prouty Garden, the place where I feel safe. I agree with Dr Brazelton's assessment that it should be considered sacred space, because when I'm there the world is shut out and I feel close to God.

Seize the Day

If I'm lucky, I might have exactly 3 minutes to speak today to a board of decision makers about the importance of saving the Prouty Garden at Boston Children's Hospital. It's the first time I've ever done something like this, and I'm pondering how best to use those precious seconds, trying to calm my nerves, and trying to remind myself that even if my voice makes no difference in the end I'll sleep better for the rest of my life knowing I spoke up for my beliefs about what's best for the overall healing of sick children.

I'm excited to finally be able to attend a pivotal hearing in person about this issue that's so important to me. Tonight's public meeting marks a major turning point in the decision to destroy or save the Prouty Garden at Boston Children's Hospital, the only green bit of outdoors available to patients in the sea of cement and, because of the passings and spreading of ashes and unique healing that have occurred there, a sanctified space. Please attend the meeting if you can, or send comments you'd like to be shared at the meeting, and of course please pray for the healthiest outcome for the children affected by this decision.

The Garden in Winter

 Audrey's squirrel friend in the garden. Her squeals of laughter watching him were precious.

One of my favorite statues in the garden. Reminds me of my children, especially Eden, and home.

Spunk Rock

Tonight's Audrey quote of the day, regarding her belly, the doctors, and everything:
"Ugh! This is taking too long! I wish they'd hurry up and figure this out. I miss Daddy!"

When the spunk comes back, that's when you know she's getting better.

She was having the best time playing with a silly hair salon game on the tablet. It allowed you to take a photo of a friend and put the photo into the face. That's pink blankie, getting a very pink hairdo.

Setbacks and Sweetness

This little girl surrrre knows how to keep things interesting! I'm very sorry to report that she woke up before dawn moaning in pain and gagging up spit, and that has continued the entire day. Lots of Tylenol and not tolerating her tube feeds, lots of abdominal cramping. Dr Jennings put her back on IV fluids for now. Probably her gut just isn't quite ready for some of what we've been feeding it, but whatever the reason today's been a cartoons in bed kind of day.  She's doing a little better tonight, and I hadn't realized how stressed I'd been until the sweet Child Life staff sent me out on a break to a painting activity and free chair massage for caregivers, and to the strawberry shortcake day at the cafeteria. That "me" time made a big difference.  For more reason than one, I'm very glad we stayed inpatient to wait for this week's scope.

Yes, Madame President

Here's raw, funny, and real for ya. What a difference a week has made.

It's much better now, but ever since the surgery my anxiety has kinda been on overdrive. It's been incredibly hard for me to leave her side to eat, shower, anything, and until she could eat I never ate or drank in front of her. When I did finally take a break in the late afternoon for "brealunner", I struggled to decide on what I wanted for food, and the break often stretched into two hours, until I could no longer handle the guilty sensation in my gut. One of the first things I did to help ease my anxiety after we moved from the ICU this past week was to teach Audrey how to use the red "nurse call" button. I explained to her that if I wasn't available and she needed help getting up to use the restroom, or if something was hurting or she needed help of any kind, she should push the button and help would come. I had her practice it a couple times while I was in the room--the first time, she was too shy to answer when the voice talked to her through the speaker, so I took care of it. I had her practice again the next night while we snuggled--she pressed it, and when they said "Can I help you?" Audrey said "Yes please." (Pause, as they processed the fact that the 4 year old was calling them herself. Then came the voice again,) "What do you need, sweetheart?" And in her most grown up voice she said, "My tummy hurts." So they brought her medicine. The sweet confident smile she gave me in that moment when she realized she'd solved the problem herself totally melted my heart. Late that night around 11, after being "nice pajama party mommy" for way too long and letting her stay up to watch "just one more cartoon" until I was finally just DONE, I got her settled for bedtime, turned off the TV despite her protestations, tucked her in, lights out, and ducked into the bathroom to put on my pajamas. A minute later through the bathroom door I could hear the nurse talking to her. Opened the door and the nurse said she'd called and said "My mommy turned off the television and I want it back on."

Flash forward to today. When I asked her last night if she was OK with me leaving to go to church this morning, she shook her head and reached for me sweetly and I knew I couldn't bear to go. We played in the playroom this morning, snuggled and watched cartoons, and celebrated the 4th birthday of our cute roommate who was discharged today. I tried to get Audrey to eat, and although she asked for food and enjoyed her tiny bites she didn't really eat more than about three tablespoons worth--but she went to absolute TOWN on orange juice and put away an unbelievable 12 ounces. Tried to get her to come outside again, but she felt tired and settled in to cartoons again so I asked her if she'd be fine if I went to get lunch and visit the garden without her. She smiled warmly and said yes, I confirmed that she knew what to do to ask for help for anything she needs, she hugged me good bye and then I got busy doing something on my phone for a few minutes beside her while she watched her show. Suddenly she looked up and said, "I thought you were going to the garden. Go!" And she pushed me firmly out of the bed with her feet.

Oh my funny, wise, exasperating and precious pint-sized dictator, I love you.

Moonrise over Boston from the 10E hospital playroom windows.

Better and Better

Healthy mouths for the win!

Another day of improvement! Her white tongue is healing quickly, and what a difference in her appetite! Dr J approved her for purees, so she can have milkshakes and blended foods now. She's still taking tiny amounts but this is incredible progress! She enjoys each tiny meal more than the last, and tonight she ate the most macaroni and cheese I've ever seen her eat--must have been at least a half cup! She's tolerating continuous G-tube feeds so we got to ditch the IV nutrition at last, and changed into civilian clothes after getting her hair washed again today. We attended a folk music show downstairs and she met the guitar player afterwards (she was so happy, I saw her first hops and skips since surgery! ), then enjoyed the squirrels and 6 inch tall green shoots in the sunny Prouty garden, then back to the 10th floor playroom. The missionaries even stopped by and brought her some fun treats. Oh Mrs Ault, how I wish you could have heard her squeals of delight as she opened the box of Valentines from her preschool classmates. She relished every one of those sweet surprises! Thank you so much for sending them!

Hot Air Balloon!

"My Very Own Gumball Machine! I love it!!"

 

She said, "Aaaa! It's so cute!!!!  I can't handle it!"

"The mouse has a candy tail!  That's so silly!"

First tastes of pureed mac and cheese, with strawberry milkshake!  Good stuff.

Playing along with the folk dance performance and meeting the guitarist afterwards.

I just noticed that the tower O' markers  in this photo happens to line up EXACTLY with her IV pole. Crazy accident or fabulous subconscious artistic instincts? 
The world may never know.

Roommate movie night! At the invitation of the other mom, Audrey and our hospital roomie bent the rules a leetle bit and watched a show together in our roommate's bed for a few minutes while I redid the bedding from a chocolate milk spill. Super cute.

Finer Tastes

HER FIRST TASTES SINCE SURGERY! She lit up and asked for a yellow popsicle as soon as I told her, then didn't do more than a handful of licks but was all smiles (me too, that'll do). Turns out the reason she's been refusing water sips is because the water tasted bad to her.... she told me that, tipped me off to check and sure enough she has thrush from the meds! Glad we can fix it and get her whatever she wants now that's soft. Moving slowly up on the feeding pump rate; she still gags occasionally but that seems to be lessening. Tummy ache is also not so constant. All great signs! Here are a few favorite photos from yesterday.

Art therapy really turned her mood around this morning.  She was pretty withdrawn, but opened up as the therapist gave her paint and asked her questions.  Audrey started talking about her siblings and  life at home and  how much she misses them.  She pointed at the pictures on the wall in front of her and told the therapist about them.  It was like I could see the stress melting off her.  Soon after that, Brian from music therapy came in and we had another incredible experience that I''ll always treasure.  She sang with him, "Let it Go"from the Disney movie Frozen, and I watched her get more and more into it.  She admired his guitar and wished she had one like it.  The next thing I knew, the therapist had returned with a pink guitar with her favorite princesses on it, and a microphone.  Audrey now serenades anyone who has the time to listen.

Cards from her church class and friends.  What a cheerful surprise!

The view looking up from my pillow this morning.

The sunrise view out our new window on the 10th floor makes me channel my inner chimney sweep and hum that beautiful song from Mary Poppins.