Annnnnnd.... She's stopped eating. Again.

 If I didn't say it out loud it was supposed to go away! Audrey hasn't eaten more than a crumb by mouth all week; she keeps reaching for food and then changing her mind and walking away. Pediatrician found nothing wrong with her when I stopped in as a walk in on Tuesday morning because she'd been so fussy overnight. The surgeon Dr Skarda tried to reach me three times yesterday to check on her because it's now been a week and a half since her last dilation. Spent the morning taking JJ to his first psychologist appointment. Finally just connected with Dr Skarda, and he graciously offered to do a scope and dilation if needed, TODAY (it's 1:30pm already), or tomorrow morning, or early next week. I already had committed to help in Aaron's classroom tomorrow morning, need to pick up kids this afternoon from school, and Justin is traveling all over Western Utah today for a fourteen hour work day and has a huge deadline at work that will keep him occupied overtime every day until the end of the month and he won't be able to help..... in short, it's a logistical nightmare laden with guilt, and my brain is full. So grateful the sun is out after the wintery morning and my sweet friend Lynn helped me think it all through on the phone just now. Oi, oi.

I said I would do it tomorrow but UGH, just got our O.R. time and it is sooo late in the day that all the kids need a place to be supervised after school unless I let them destroy the house alone...

Evening update:
OH MY WORD I DON'T BELIEVE IT, DR SKARDA IS SO AWESOME! He just called me and said that he just got out of a meeting and looked at the schedule and saw how late we were, and asked me if that was a problem. I didn't go into detail but said it was a challenge, and he said "I told them not to do that, I don't know why they did. I'm going to fix this, hang on." He called me back in two minutes and said to bring her at eight. He said this is just a little half hour thing, his other patients can manage for that time. Such a little thing made a really really big difference for me. WOW

And then, to my great surprise we had a wonderful visit from some dear friends from Colorado who stopped by unexpectedly this evening.  They were here for a couple of days and I have been trying hard to hook up with them, (it's been four years since I've seen them!) but with the change in Audrey's health I had to cancel our meeting.  They showed up at our door with dinner, a huge relief as I hadn't even figured out what I was fixing, just as I was finishing giving Audrey and Gideon a bath. What a blessing!  We had such a sweet visit, and right in the middle Justin arrived home safely from his dangerous long day of driving through the freak snowstorm for meetings in rural southeastern Utah. 



 

Raindrops

 No bones about it. I hate yucky freezing cold gray rain. My only consolation in the ending of sweet sunny days is the start of fuzzy sweaters, yummy boots, chocolate baked goods fresh from the oven, storytime by the fireplace, and awesome choir rehearsals.

Two mornings ago as I hurried to get all the children out the door to school, it was pouring, drenching rain in an early thunderstorm. I got a sleepy Audrey out of her bed, changed her diaper and carried her downstairs through the house and she said, "Mommy it raining," and I was feeling bad about needing to carry her outside through the pouring rain to our detached garage where the empty van was waiting for kids to pile in. I walked through the kitchen listening to water dumping on the roof, bracing myself, and then I stepped outside with my warm pink bundle and a magical thing happened. It was as if the heavens had suddenly turned off the faucet. It was incredible. I carried Audrey to the car completely dry, not one drop from the sky touched her, and buckled her in, then walked back to the house to get the older children just as it started to sprinkle again. 

That same day, not knowing anything about that experience, my sweet friend Amy (whose daughter Aliyah has been such an inspiration to us) felt moved to share this beautiful song with me, "Blessings" by Laura Story Sometimes just when I start to forget, I receive the most beautiful reminders that there is more to the pattern in our experiences than we recognize.

"Blessings"

We pray for blessings, we pray for peace
Comfort for family, protection while we sleep
We pray for healing, for prosperity
We pray for Your mighty hand to ease our suffering
And all the while, You hear each spoken need
Yet love us way too much to give us lesser things

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

We pray for wisdom, Your voice to hear
We cry in anger when we cannot feel You near
We doubt your goodness, we doubt your love
As if every promise from Your word is not enough
And all the while, You hear each desperate plea
And long that we'd have faith to believe

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near
What if trials of this life are Your mercies in disguise

When friends betray us
When darkness seems to win
We know that pain reminds this heart
That this is not,
This is not our home
It's not our home

'Cause what if your blessings come through rain drops
What if Your healing comes through tears
What if a thousand sleepless nights are what it takes to know You're near

What if my greatest disappointments or the aching of this life
Is the revealing of a greater thirst this world can't satisfy
What if trials of this life
The rain, the storms, the hardest nights
Are your mercies in disguise

A Spooky Sunday

Audrey sacked out on the ride home from the doctor's office this afternoon.

I woke up to find Audrey struggling with her chest pulling in and out sharply, we call it retracting, and she was coughing a lot and seemed to be wheezing.  We hurried her in to see the pediatrician because that is something we've learned not to take lightly--I just have to say, as much as we love the Sabbath Day of rest, we are so incredibly thankful to the wonderful doctors who are willing to come in and help our sweet children in an emergency, even on their Sabbath.  The doctor saw the wheezing and retracting in the chest that we'd been seeing, but thankfully her oxygen saturation remains high--something we don't have the equipment to check at home. The pediatrician prescribed albuterol but Audrey was too upset by the mask/blow by apparatus to accept it--they likely remind her of the propophyl mask that puts her to sleep in the operating room; I wonder if Versed before going in on Friday could have prevented this problem of her terror about the nebulizer now. So sad, she had also done the same thing with the oxygen mask in the post operative unit, threw the biggest angry fit wanting that thing far away from her face.  Her terror was so bad in the post-op recovery room that they actually gave her a dose of Fentinel to calm her down on Friday. For now we will try to manage without the nebulizer mask and maybe try to get an inhaler version in the morning. She was also saying her ear hurt this morning and sure enough there was an infection; drainage from that alone could be a big part of the cough. The doctor was concerned about the wheezing/rocking chest and said to watch her temperature the next couple of days, as a spike would probably mean pneumonia given her other symptoms, but thankfully her temp remains normal tonight. It's so crazy how things that are simple with our other children we've learned to take so seriously with her, coughs especially, but they have just given us too much trouble in the past four us to take them lightly. Feeling very thankful she is home tonight with us and resting in her own bed, not in the hospital or even needing oxygen. Her cough and gagging interrupt her sleep every little bit, so this could be a long night, but all things considered it's a lot more peaceful night than I'd feared. Thank you so much for your love and concern!

Smiles on the Morning after Dilation

Audrey woke up all smiles this morning! Last night she slept most of the car ride home from the hospital, then woke up and ate some pizza (yay!!), ran around with her siblings until bedtime and slept through the night. We are sad that Justin has to go to work for at least six hours today, but otherwise it's shaping up to be a great Saturday! Have a great weekend everyone!

Also received a text from Dr Skarda very early this morning, checking up on her. How cool is that?? I told him about the things we'd learned from our nurse and asked him if he agreed that this stricture seemed to be caused by inflammation, possibly from acid reflux due to being off the Prevacid for a bit. He did think inflammation was the cause of her stricture, so there's that.

Something has Changed

 

Audrey says "YeeeHAWWW!" Playing in the pre op while waiting for her dilation. Dr Skarda just came and said she was super tight already, like we suspected, and he carefully dilated her all the way to 15 mm. He said that the stricture didn't look like a ring of scar tissue (like we've dealt with in the past), but rather like half of it was sort of stuck together or collapsed. Our awesome nurse had an esophagus issue of his own and he was talking just now about his own history of strictures that are caused by inflammation from acid reflux. The way he described them made me think Audrey's stricture was more one of inflammation like that rather than from scarring. We had a hiccup getting a refill on her Prevacid prescription for a couple of weeks this past month plus she had a little head cold a couple weeks ago, so maybe this stricture is a result of inflammation from those.We'll come back for another dilation in two weeks. Thank you for all of your kind words and prayers!

Relapsing

I'm sorry to report that Audrey seems to be relapsing. She has been getting food stuck for over a week now, and her last dilation was not even two weeks ago. We are at a loss to explain why. Prayers and warm thoughts please. Called the doctor and she will be dilated Monday.

Silly Moments

A few wonderful silly moments from our past couple of weeks

September 10
At 6:45am, the boys' room is all dark and quiet when in his sleep three year old Gideon calls out, "Swiper no swiping! Swiper nooo swiping!" 


September 2
Happy Labor Day! Audrey stood up in her crib first thing this morning and called "Daaaddy! Daaaddy!" Justin was still asleep so I went in and greeted her and started disconnecting her feeding pump to get her out. She looked at me and said matter of factly, "Daddy at work." I told her "no, not today. Daddy's not at work." She thought for a moment and said "Daddy at church." I laughed and said "no, Daddy's not at church." And she looked baffled. I could just see her wheels turning, wondering where he was, never expecting him to still be in bed on a Monday. Clearly she was certain that Daddy--who has been working early mornings to late nights six days a week recently plus assisting at the church early mornings on Sundays, yet who remains her devoted royal footman at all other times--must be one of those two places if he wasn't answering her queenly calls for attention.   

Being the sweet wife that I am of COURSE I had to then wake him up immediately to tell him the cute thing she did. Yep I did.

September 1
I put this dress on Audrey yesterday evening for a party, and she showed it off to her three year old brother Gideon with a grin and said "My a princess!" And she twirled around to make the skirt flutter. Gideon giggled and took her hands and they turned round and round together saying "Dancing! Dancing!" Then Audrey came over to me, grabbed my hands and said "Mommy dance me!" So I went around with her a few times.

August 28
One afternoon Gideon was resting with me on my bed watching the ceiling fan go around, when he sleepily exclaimed, "Mom, you have a helicopter light!"

August 25
Happy birthday to the wonderful father of my children! Justin is enjoying his gift; after years of wishing for one he finally has a "papa bear chair"! (I sacrificed a part of my kitchen floor savings but it was sooo worth it for the look on his face! Everyone else is enjoying it too... in fact this mama bear has found the chair to be downright carnivorous.)

August 23rd
Pulled into the bank drive through lane and three year old Gideon exclaims with delight, "The Candy Store!"

(Clearly the fact that they give kids a treat when we visit has made a big impression. It's a fun perk; I often forget but the kids always remind me! My eight year old, at that age, used to have the city pretty well mapped by which of my usual errand spots gave out which kind of treats for children, so we'd walk into the grocery store and he'd say, yay! Cookies! And so forth. They learn quick that it pays to put up with the boredom of shopping with mom. And it's great leverage if their behavior is borderline....)

August 23rd
Audrey is in rare form today, a crazy cute firecracker of a two year old. I kissed her and told her, "you're a nut!" She looked me straight in the eye and said "No, my a strawberry."