December 31, 2014

2014

December 24 trip to the Children's Museum

Audrey loved the little pretend hospital at the children's museum! She even laid down on the surgery table. She really loved pretending to be a nurse and patient.

Sad Day

One of Audrey's namesakes, my precious friend Anna, needs prayers for strength and comfort to her family as she wraps up her valiant battle with this disease I detest. I can't begin to tell you how much I love and admire this woman. Her example of Christlike service to her family and everyone she knows, her laughter and joy and ceaseless hard work, have all touched my life immeasurably. I'm thankful for a deep belief that life does not end when our bodies quit working, that the Lord is bigger than all of our griefs, and that He knows exactly how to comfort us when we turn to him.

December Blessings

So much on my mind, more than I can share! I'm celebrating and mourning with close friends in a strong juxtaposition of emotion this week. Glad I could sing some of it out last night in the concert. Heartfelt thanks to those who've done incredibly kind things for me the past few days. Urgent prayers for those who are hurting. Tears of joy for those who are in a place of relief today. You know who you are.

Justin and I have some miraculous news that I hope will lift spirits. Audrey has inexplicably shown dramatic improvement over the past couple of weeks. She's suddenly been able to swallow things she's never been able to before, like Mandarin orange sections, without getting them stuck in her throat. She weathered a cold and a stomach virus like a champ. She ate an entire half grilled cheese sandwich last week! She had a healthy toddler-size Thanksgiving dinner without coughing and regurgitating, only complaining a little of discomfort. This is huge, you guys. HUGE. No pneumonia. Minimal reflux. I'm afraid to say it out loud lest we jinx it! Deep breath. We are very seriously considering delaying her surgery, possibly just scoping to check the status of the hole in her esophagus next month instead of staying for major surgery in Boston. Waiting to hear back from Dr Jennings. Stay tuned.

These photos are of what happened when a surprise package arrived Monday from my sweet friend Tamara. I'm tongue tied. So much love in my heart today. Deeply mourning with precious friends, overjoyed for blessings in the lives of others, but also full of faith and hope today.

October Fun

Audrey had a wonderful late October with her grandparents visiting from Oregon for her big sister's birthday. We visited a fun place called Cornbelly's where we solved a giant corn maze and played for hours! She was miserably sick on Wednesday with a nasty cold, but she bounced back in time to enjoy a very happy Halloween! The weather was beautiful here, 70 degrees still at 9pm when we were trick or treating. Feeling very blessed.

Sick Miss

Little princess is miserable with a cold and watching movies this morning. I hope she gets feeling better quickly to enjoy the holiday fun! I'm grateful she hasn't been sick yet this season before now. She always seems to come down with everything so much worse than the rest of the family, and for some reason her digestion slows way down and we have to turn her feeding pump rate down to a crawl or she sputters and cries and refluxes terribly. Trying a new med prescribed by her new GI for times like these, (Dr H said we should always have this on our shelf for her--Cyproheptadine), and hoping she can handle a higher rate than last night.

Dancing Dreams

3-year-old Audrey has grown a new connection between her esophagus and lungs, and we are flying to Boston to have it fixed in mid January. This will be her second resection, and her fourth major surgery. Feeding by mouth is still going pretty badly--she regurgitates a lot of what she swallows. So, we're back to about 85% G tube dependence right now. But she's growing and happy and makes us laugh every day. Here is a photo we caught when we went in to hook up her feeding tube last night. I think she looks like she's dreaming of dancing, like a ballerina who fell asleep mid-leap! I hope someday she does run and dance for pure joy. Right now she gets tired easily and has a kind of funny gait, so I am worried we need to get an MRI to check her for a tethered spinal cord. We plan to add that to the list of tests they'll do in Boston before the big surgery on her esophagus in January. It's a beautiful autumn day in Utah today!

Turbulence of Heart

Waxing emotional tonight, please excuse the dramatic voice of my weariness. This thought has been churning beneath the surface all week. How do I find the courage inside to make the call to schedule this next major surgery? I've managed to busy myself out of dwelling on it most of the time, but the sinking dread and the relentless ticking of the changing season have made me feel at times an early chill of winter, and I know that the time to decide has come. Strange that nature seems to have once again echoed my heart. The fresh snow dusting the nearby mountaintops, this morning's unexpected frost on the windshield, my huddling against the warmth of my husband's back at night...can it be only October second? I reveled in the golden sunshine this evening that seemed a merciful wing protecting us from the black clouds to the South. Sometimes it feels so selfish to ask this again and again when there are so many pressing needs out there, but please pray for us. I look at my children and a part of me weeps with the impending mountains of pain that Audrey must still climb, and the impending loss of those days together with the other fantastic and fragile, fragile and fantastic four, the unknown length of time we'll be apart and the ways they'll need that particular touch of their mother in their lives, the way mom knows just the details to watch for to correct, comfort and counsel. I look at my amazing husband who works so hard for very long stressful days to provide, then comes home and comforts children, cooks better than I do, repairs our old cars and even older house, is everyone's favorite, gets little sleep and almost never complains. My hurt is full to bursting with love for them all, with the desire to protect and to heal and to fix things that cannot be easily fixed, and my soul cries out with all of my strength, Dear God, please protect this family.

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!!!!

Exhausting for All

Little Audrey has been having a terrible time swallowing solid food again lately. So much has been coming back up at mealtime that she has lost weight and we have started giving most of her food through her g tube again. We were convinced she had strictured in her esophagus, and she was actually asking us to please take her to the doctor so she could eat some of her favorite things more easily again. Since I have such a full week and was so traumatized by her last esophagram in January, Justin said he would handle this one. But when push came to shove, I couldn't stay away. He had been so sure she would take the drink for him, and Audreywas so confident going in, but when the moment arrived to swallow, she quailed. Even with Dad doing most of the urging her to drink the stuff, it wasn't long before she was in tears of refusal and fighting him at every turn, just as she had for me last time. I stayed out of the way except when they needed me and also added comments from our experiences. I had brought applesauce and Hershey's syrup that another mom had recommended, and we wound up trying it all with virtually no success. We tried upright with an open cup, lying down (scary because she aspirates), g tube, syringe in the mouth, for an hour and only just barely got enough imaging to see what we needed. They did not see any significant stricture. It looked wide open, and to my relief we watched her stomach appearing to drain normally. It's great but so frustrating because we don't know why she's having so much trouble with solid food. Watching and working with that sweet little girl in her terror and fighting so hard against what she needs is so incredibly draining in every way. I wasn't even the "bad guy" this time, and I feel totally wiped out.

The Trouble With Toast

Serving Mommy a Snack with Pretend Food

Between RSV season and the new 1pm church start time for the three hour block, we've been taking the whole family to sacrament meeting but afterwards taking Audrey home for nap instead of nursery. She really, REALLY wants to go to class, both she and Gideon do, and they always cry when they aren't allowed to go, it's so adorable! So we relented last week and let Gideon start attending his class again, against my protective instincts, but I'm holding firm on my feeling that baby girl needs to avoid nursery for now. Today it was my turn to take Audrey home for nap, and I gave her a little snack before sleep, some bread cut into the shape of a kitty cat (which had been cut out of a slice of toast by her big sister and brothers who fixed everyone eggs cooked into toast slices this morning). After she enjoyed her kitty snack, she drank some water and to my chagrin, the bread all came back out. I don't know what to think. I don't know if this is just our new normal and we will just always be dealing with this, or if there is a problem that needs Dr Skarda's attention. We've been through this very recently, just a couple weeks ago, and no stricture was found after a traumatic attempt at getting her to swallow barium for a picture of what's going on. Sigh. On my way to prepare milk for her g-tube because she's still asking for food. Sometimes I just feel so blind about how to help this sweet little girl.

Esophagram

No stricture! No stricture! Took Audrey in for an esophagram this morning, which took hours longer than it should have and she was super grumpy from fasting and wanting her nap and being too scared to drink the barium,but it was all worth it, there was no stricture which means no surgery tomorrow! She and I brought home celebratory pizza for everyone.