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.

The Dilation that Wasn't

Wonderful news this morning!! Dr Skarda says Audrey's esophagus looks wide open with no signs of acid, and he didn't even need to dilate! Her new medication seems to be doing the job. He was going to put in a stent for two weeks if she was starting to stricture, so I am over the moon for this report. Phew!! Thank you for all the kind thoughts and prayers! It means so much to us.

Homecoming Celebration

A perfect morning for the BYU Homecoming Parade and free Blue Pancake breakfast!!

After the parade, and before the mountain of Saturday chores, we went a-pumpkining at the patch where Justin keeps beehives. It was a perfect fall day washed in golden light.

 

 

Success!!!!

The leak is healed, the stent is out, and she's been approved for soft foods by mouth!

I wanted to visit with some other families here at the hospital but needed to feed Audrey as soon as possible, so I took her to the Ronald McDonald Room to see what they had in the refrigerator. This very hungry caterpillar is getting her first snack in two weeks and begging for everything! Her selections at the hospital's Ronald McDonald Family Room included 3 bean salad, honey lemon yogurt, water and a cupcake! What a funny girl. I can't stop smiling...

 

On Our Way

Audrey is going to Primary Children's Hospital today to have her esophageal stent removed. While she is still under general anesthesia they will check to see if the leak is healed by putting barium liquid down her throat and watching on a live x-Ray screen. If the liquid contrast stays where it belongs instead of creeping outside the walls of the esophagus, they will remove the picc line in her arm and let us resume using her stomach for g-tube and as much food by mouth as she can tolerate. Our hope is also that having had the stent in for two weeks plus changing her antacid medication (starting tomorrow) will mean no more strictures for a long, long time.

I am heading to the hospital in a few minutes. Very hopeful that by the end of the day she will no longer be crying when she sees or smells food, but can join us instead. We've tried hard to keep her away from our meals but she is such a smart kid, it's been hard for everyone. (Thank heaven for Dora the Explorer!!) Favorite "sad but cute" moment of the past week: as she's reaching for food we said "I'm sorry sweetie, but the doctor says no." And she replied angrily in her little voice, "Doctor says yes!" We've been extra patient with our funny little miss contrary this week... her "no"s to virtually everything under the sun when she's tired or put out have been so much work to manage but SO FUNNY. We've even gotten "no blankie"s out of her! I think none of our kids have ever been the stereotypical two year old the way she has, and we feel so seasoned as parents now that it's easy for us to laugh at and take with just the right mix of salt and seriousness. As Lynn so wisely put it, "You don't suppose she thinks the world revolves around her, do you?"

Hiking the Y

 

Tonight is the annual "Lighting the Y" hike for BYU Homecoming. It has become a tradition in our family and we are looking forward to it very much. If anyone is interested in joining us we will be leaving at 5 p.m. and will be hiking at a toddler pace this year to let the little ones do as much as possible on their own. The rest of the crowd begins at 6pm and the lighting happens around 7:15ish. If we are lucky to arrive early enough our family will be one of the lucky ones turning a lightbulb at the assigned moment, so when you look up at the glowing mountain tonight I hope you think of us and especially Audrey up there climbing her own metaphorical mountain one dusty step at a time, and smile! The view from the top is worth it.

Justin is being a trooper and humoring me, I don't think he's as excited as I am (we're both out of shape and he knows we're going to end up carrying one or both toddlers at multiple points) but the weather is perfect, and taking it at our pace I think we'll be just fine. Last year at this time I was in Boston preparing for the family to come join me for the holidays. The last time we did this hike, two years ago, Audrey had just gotten home from five months in the NICU and was on continuous g tube feeds-- which ended up soaking her because her tube came undone at the start of the hike and I didn't figure it out, the poor thing. This time, ironically, she will need her picc line hooked up before the descent, so it's not too different except we're more experienced now, and no problems are allowed! I have to hand it to Justin, he's been doing the picc stuff this week, and getting that puppy set up is COMPLEX, there are seriously about forty steps to setting it up. He will set it all up before we go as much as possible and it will be easy to do the final connecting up on the mountain. I'm really excited for this. It's going to be a good night.

 

We had so much fun hiking the vigorous Y Mountain trail to set off BYU Homecoming week and helping light the mountain with many other BYU students and alumni. It turned out Audrey wouldn't walk at all so I carried her up almost the entire way, while Gideon was a trooper and walked up with Eden most of the way and she carried him part way. After the lighting, (three of us even got to screw in one of the giant light bulbs) Justin set up Audrey's picc line with TPN and we carried the babies down in the dark, this time I carried Gideon while Justin carried Audrey, and Eden (who had twisted her ankle) got the grand privilege of riding down in one of the coveted BYU golf carts. I enjoyed walking down with the EMT team (who were hiking with radios) which gave me a lot of comfort because I was really worried about Justin or I slipping on the loose gravel on the steep trail with the babes in arms, especially with the picc line. Thanks to their genial conversation, instead of spending the downward trek as an anxious wreck I got to hear about the HAM radio club from an electrical engineering student named Alan. We even made it down in time to partake of the donuts and cider. Fun times!

Told you the view would be worth it!