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.