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!

Yikes! Surprise Homecoming

Major change today: Dr Skarda talked Justin into Audrey coming home on an IV (picc line) antibiotics and TPN, with nothing allowed by mouth or G tube until at least next Friday when she'll go back in for stent removal. I should be so happy to have my family getting back together at home, and instead I'm a nervous wreck. A busy two year old in our busy household with an IV pole, and no snacks or drinks allowed, is not a recipe for success.... I was able to wrangle permission to have her on it only fourteen hours a day, because I only trust it strictly in her crib or in arms. Feeling like we kind of went from the frying pan to the fire, but grateful we'll be together as a family tonight.  

It definitely simplifies LDS General Conference weekend, which is always a special family time. And Birgitte if you're reading this, my hope is rekindled that I can come to your art show this evening. We should also hopefully still be able to do our traditional family hike to light the Y on the mountain for homecoming week next Tuesday night. Just trying to breathe right now. Our accident last weekend with the picc line, on top of her being so miserable and needy 24 hours a day really rattled me. Glad Justin will be here to help, hopefully all week, thanks to the government shutdown.

To my friend Rosa who freaked out on my behalf about her coming home with an IV pole I said, "This is what I get for leaving for a day, right? hahah!"  Crazy, I'm very stressed. I thought I was very clear when I talked to everyone, that she should never have an IV pole at home when she is out of bed. I think, I HOPE, we have a reasonable compromise. When I said fourteen hours maximum that I could have her on it safely (they initially wanted eighteen) I meant twelve in bed for the night and two for nap, except they came back and said ok, but it had to be all in one block. Sigh. Dr Skarda said if I feel like it just is not working out, I should call him and they can have her back in the hospital, no problem. Justin said she is tired but feeling herself, no pain meds today (wow!) so that helps my feelings a lot. 

Audrey brushing Daddy's hair. In one tiny corner of the universe, one household is very thankful for the government shutdown. He has been working six long days a week for months on end, and the government employee furlough could not have come at a better time as Audrey has needed a lot of individual parent help this past two weeks, and after a week in the hospital I was running on empty. Instead of feeling like I'm holding up the planet alone, this week I have instead been able to get over a cold, focus on the uplifting messages of LDS General Conference over the weekend, and give more attention to the other four children. In fact, Audrey's "Superman" has handled the whole IV enchilada. I actually fell asleep during the nurse teaching us how to do it at our house at 10:30pm the night she got home, it was so embarassing but I was absolutely exhausted. Seeing this kindly, over the coming week Justin did nearly every. Single. Treatment. If only we had a way for him to be home with us all the time and somehow still make a reliable living... when he goes back we will be sad. Thankful, but sad.

Switching Places

Tried to drive back to the hospital yesterday after a fitful night's rest but was still falling asleep at the wheel, so after doing some errands together, when I intended to head north, instead Justin sent me home again to sleep. It was not until he waved his magic guilt-releasing wand that I was able to sleep well for a few hours before helping the children with homework before bedtime. Mercifully Audrey's stent replacement went perfectly and she was comfortable and happy all day. We were together as a family this morning for breakfast, and Justin is excited to be on his way to go spend his day with her while I enjoy a quiet morning with Gideon, then volunteering at the school and a long anticipated lunch with friends. We plan to trade off again this evening.

Afternoon Update

This is the stent Dr Skarda took out of her esophagus today. He replaced it with an identical one that he wants to keep in nine days more.

What a morning!! Fun times with Audrey, a good change in our OR report time, rehearsing my challenging choir music in the hospital room with a borrowed keyboard, a hug from wonderful Amy, fantastic lunch of Thai food from the amazing Kira, big pow wow with Dr Skarda where we learned the leak is still there but her esophagus looks healthy and strong, no erosion, so back in goes the stent, this time the plan is to leave it on for the next nine days. When and if during that time we feel she's ready to come home to wait, she can come home, but I don't feel that she's ready just yet. Waiting, hoping, thankful for friends nearby and for those cheering us from afar. Justin is adjusting to domestic life by canning pears and harvesting honey. I plan to travel home this afternoon once Audrey is ok, attend rehearsal tool nine, sleep in my own bed if I'm too tired to drive the hour back up, and return in the morning. Maybe I can even take kids to school.

This is an x-Ray showing the liquid contrast going down her throat just now in the OR, showing that the leak has not yet healed. Looking at the place where the leak provides a new smaller side path for the stuff to go down the outside of her esophagus, I just can't resist the terrible pun that comes to mind: it took the road less traveled by, and that has made all the difference.

I feel like such a jerk driving south without my baby.... there's also that crazy Rip van Winkle effect-- summer has come and gone while I've been inside those walls. But I have to say our children's hospital has a lot of class, in tons of ways but specifically have to brag that not only is parking free but valet parking for patients is free, and none of the valet attendants accept tips. If you try to tip them they will suggest you make a donation to the hospital instead. 

Heading into the O.R.

So relieved that the powers that be were able to change our OR time so it makes it possible for me to be here for her and not miss a mandatory choir rehearsal tonight. Waiting to see the surgeon now. Audrey is practicing her newest mad skill of card lacing, and she's a bubble catching pro!

This is Jo, our cute child life specialist who has been blowing bubbles for Audrey in the OR waiting area.  Audrey was smiling a ton right before this picture was taken; I was hoping to catch it. She had been popping bubbles with her feet and hands and making me laugh. The doctors opened the door to come in right as I shot this picture so she is looking at them warily.

 

The Short Version of the Weekend's Events

Spent an hour writing a short novel of an Audrey update for yesterday and the night before, and my eyelids got too heavy to write more before it was finished, so it will just have to wait. Short version is, picc line accidentally came out Sunday night, back in the OR yesterday to replace it, then spent a wonderful evening in the music room, just now survived a third picc dressing change, and she now has laryngitis which has me scared about the stent eroding into things it shouldn't. Gagging has calmed, cough is better, nose is runny which seems weird. Plan is to check things in the OR tomorrow, probably take out the stent to look at the tissue and see how she's handling it in there, if the leak hasn't healed and tissue looks ok they might put it back in through Friday, he really wants it in a full seven days if she can handle it. She's kind of miserable today actually, despite wonderful care and sweet nurses. My mom heart is broken for her. But yesterday inspiration finally struck and I wrote pages and pages in the wee hours and again in the late afternoon, and two beautiful songs are taking shape. For that reason alone I am glad to have more time to work on them this week and hopefully reach a point of satisfaction to record them. It's an odd juxtaposition to have a mother's nightmare and a lifelong dream in the same place, but in a way I guess you could say we are truly living life to the extreme.

Starting to Smile Again

Audrey and I passed this statue in the hospital hallway and she pointed at it and exclaimed "Daddy!"

That pretty much sums up her opinion of Daddy.
Well played, Justin. Well played.

We miss you.

Busy Morning

Busy morning, traumatic picc dressing change and lots of pow wows with doctors, but just snuggling baby girl now. I love how snuggles and Dora the Explorer can heal so much!

Some Good News

Tears of relief!! It's probably just a nasty cold, which for a kid like her is a big deal but nothing like what this chest retracting could have meant!! You guys, oh my goodness, I was so so SO worried!!! Massive stress. Was talking to the doctors, and waiting for the x Ray, and then my friend Heather was at the door with my bag of things from home and a hug, and right behind her were the LDS elders, they came in and said someone had called them to give her a blessing. It must have been one of you. The x Ray came on the heels of the elders, and the doctor stayed to read it right there. When he told me the lungs were clear I almost cried. Then as the doctor walked out, my friend Kira who works at the hospital came in, and made me a cup of peppermint tea and more hugs. I feel so blessed and loved!!!! We are now on precaution which means no more wagon rides unless her swab comes back negative for the virus. But oh, MAN, I'll take that over chest tubes and pneumonia ANY DAY.

Scary Developments

Ugh, I wish I had better news!! Audrey is struggling more and more to breathe. Her chest is retracting and she is coughing a ton. Heading to get a chest x ray and having terrible deja vu. Last summer her esophagus leaked fluid that collected around the outside of the lungs, and she needed a chest tube drain, which punctured the lung because it wasn't in the normal place due to her previous surgeries, and no one knew it had until she had collected 60ccs of air around her heart and needed a second chest tube to get that cleared.... still scared of the stent eroding the esophagus, just, digging deep for courage tonight.

Results of This Morning's Esophagram to Test for Leaks around the Stent

Ok so, test results are in and here's the scoop. Audrey and I are here at Primary Children's Medical Center through Wednesday at the earliest, possibly through Friday. Her esophageal stent is not keeping a perfect seal but is still doing more good than harm, so they will leave it in and give her a picc line and TPN (intravenous nutrition instead of just fluids like she's been getting). Her oxygen also keeps dipping below 90% in her sleep do she is on that too when she sleeps. 

Dr Skarda might take it out Wednesday or might wait as late as Friday to remove the stent. During that time we will receive high dose PPI as well as continued antibiotics to prevent acid reflux and infection in the space outside her esophagus. Sorry for all the medical jargon, I know some of you are used to it so I throw it on here. Basically her stent lets a little bit of stuff go around it when there's a lot going down her throat at once so it's not safe for her to drink or eat, but it's still holding the leak closed as long as it's just her saliva she's swallowing, plus out helps keep the right part of her throat open so they will leave it in. 

She will have a minor operation today to get a deep intravenous line called a "picc" through which she will receive specialized food deep into her largest veins. We suspect that her Prevacid has quit working for her body for some reason, causing a lot of avid reflux that has caused the damage and strictures we've been dealing with these past few weeks. They will give her a strong medication to prevent stomach acid via her IV, and when we finally go home we will try a new medication to prevent stomach acid and see if that makes a big difference. 

Ok here's the part where people are always asking what we need and I'm embarrassed to ask so much of our sweet friends AGAIN--forgive me but I'm going to be forthright with this, I wish so much that we weren't seemingly so constantly in a position of needing help through this challenge, but we really just stand in need of a few very specific things and I hope you can help. I need to organize afternoon rides for the children from school (and to of possible) and childcare for Gideon for the first couple of days this week and possibly the entire week, and dinners would help Justin a ton as he will be working until 6 in order to get the kids off to school in the morning. A further complication, or potential simplifying factor, is the impending federal government shutdown on October 1st, which is looking very likely-- meaning Justin will be laid off on Wednesday for an uncertain period of time, potentially weeks to months, until a budget agreement is reached. If that happens we will only need the extra help this Monday and Tuesday until he becomes Mr Mom for a couple of days till I come home. 

I would love to see visitors if anyone lives nearby or wants to make the drive. I still have no change of clothes, but at the latest Justin should be able to bring me some things Sunday night. It was fun visiting our primary nurses in the NICU today and using Skype to attend an awesome art gallery event for kids with my family. Looks like I'll have time to write that lullaby for Audrey with the music therapist and watch the Dr Who episodes I've been looking forward to, woo hoo for that! The hardest part will be hiding from my baby girl whenever I need to eat and telling her no when she asks for a drink of water, and keeping her happily occupied as she will need to spend most of her days in her crib, poor little thing. We can do this, we've done it before and its going to be ok. At minimum we just need rides for the children home from school once a day, their schools are near one another. Like the good old Beatles sing, "I'll get by with a little help from my friends." Thank you again for all of your love and prayers!!!

In the Hospital

Well, our little half hour procedure did not go as planned.  Audrey developed a tear during the dilation, and Dr Skarda put in a stent.  We will be in the hospital for observation and care of her tear with intravenous antibiotics as well as pain management.

Still, I feel wrapped in love tonight thanks to the care of so many. Thank you to Leigh Ann the hospital worker who gave me an unplanned tour of the changed parts of the hospital because I needed to sort out some insurance stuff and charge my phone, and there was a place to do so in the parent room after which she showed me the newly redesigned children's playroom and then, to my utter shock, an entire brand new music room that was so beautiful that I couldn't hold back the tears. Seriously you guys this thing is a jewel, and will bless so many families, particularly thinking of my sweet friend Aliyah who is coming for colon surgery on Monday. It was a recording and film studio full of beautiful musical instruments, with studio lighting and awesome art on the walls. I could feel it was in a sense sacred even before I learned that it had been designed by a family in honor of their talented teen musician who had passed away after a battle with an illness, and the beauty of it just took my breath away. When I saw it something broke open in me and the tears and the words wouldn't stop, it was so incredibly embarrassing and yet the two ladies didn't seem to mind at all. The music therapist listened patiently as I summed up the past five years in five minutes, and then at her urging she played while I sang a couple of my favorite songs and she offered to help me compose and record a lullaby for Audrey. It was an hour I'll never forget. Then Amy and family, thank you for your sweet visit, the treats and supplies, hugs and kisses and priesthood blessings for Audrey and I. Powerful words of comfort, strength and healing of all kinds were spoken in those prayers. After they left I snuggled Audrey until she was comfortable and asleep, and walked to the Ronald McDonald House Room that used to be a humble parent resource center and is now a full blown paradise, for a scrumptious free home cooked dinner. What are the chances that I would be sitting at dinner across from another Long Gap EA NICU mom who needed to talk? Coincidence, with only two of us in the hospital tonight? I doubt it. Settling in to sleep and feeling blessed.

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."

Dilation Number Umpteenbillion, Salt Lake City

Audrey is excited about getting "Ducky feet" again as she prepares for the operating room. She says "Kack, kack!"

Dr Skarda called Dr Manfredi yesterday to get the scoop on Audrey, and Dr M apparently said that in his experience Audrey copes really well with her stricture until it gets pretty tight.... in other words, she'll just adapt how she chews, eats or drinks until there's almost no room left to get stuff down. He was spot on. Just talked to Dr S, she is recovering now. That little sweetie was coping with a 3 millimeter wide esophagus!!!!! UGH. He cautiously brought her up to 12mm and wants to see her again in a month, when depending on how things have changed he may try to get her back to 15. There was some mild scarring developing down in there but he didn't think she needs the specialized Boston treatment just yet, maybe in a couple months. Love Dr Skarda, he seems like a great communicator. He gave me his email and contact info, and will share today's results with both Dr Manfredi and Dr Downey. Also really appreciated the anesthesiologist Dr Seely, who took a leap of faith twice with our procedure today; first, with allowing me to convince him I was experienced and confident enough to bring her back to the OR myself and put her to sleep, and second, to make the brave call to quit trying after two pokes for an IV and do the procedure without one, since the need for one was very unlikely. She's a legendary "tough stick" so most of our IVs are an ordeal; I'm impressed that he chose to save the next vein for another day. One less thing to pull during recovery. This was also our first procedure in ages without Versed on board. I was a little worried about that but she was calm as a summer's day, and that stuff keeps her sleepy for a very long time, so going without it is also speeding up our recovery. We might be out of here in a few minutes...

Audrey's Animal Sounds

Last night Justin started asking Audrey about the sound different animals make. She did a great job and it was sooooo cute. Then the kids picked up on the game and it morphed into her answering "roar" for everything, from kitties to mommy to the universe. Aaron was in fits of giggles asking her things like, "what sound does an atom make?"
"Rawwwr!"

The Sacred Black Hills

Our first camping trip to the Black Hills of South Dakota was nothing short of epic, full of wonders great and small.  One day we passed through a thunderstorm that pounded the land furiously with hail stones the size of golf balls-- the largest any of us had ever seen.  Even half melted this stone was an inch and a half in diameter.  There seemed to be a metaphor in this simple white ball, which had been thrown about so violently high above in the great black storm clouds, falling thousands of feet to land in the mud, and then recognized as a thing of great beauty and passed reverently from hand to warm hand.  It was easy to see why the Native Americans have always held these lands to be sacred.

We're abounding in good news and sweet blessings today! We just returned home from a week of camping in the Black Hills of South Dakota, our first ever camping trip with Gideon and Audrey. It was all planned by Justin's sister Carmen, whose birthday it also just happens to be today, and her husband Jared, who together took care of nearly every detail so that our only job was to tag along and see incredible things with them, their three children, and Justin's parents! Thank you Jared and Carmen, Diana and Michael, and Lynn for your hard work and generosity making those magical experiences possible! We and the kids will remember this forever. My feelings about this trip can be summed up in this quote by Johnson Holy Rock, a Lakota tribe Elder;

"If a man was starving, he was poor in spirit and in body, he went into the Black Hills. The next spring he would come out, his life and body would be renewed. So, to our grandfathers, the Black Hills was the center of life, and those areas all around it were considered sacred, and were kept in the light of reverence." To me that rings true of our family's experience this week.

 

In the past seven days I have slept in a place where the precious minerals are so abundant that the ground was littered with chunks of beautiful quartz, white agate and mica and even the dirt sparkles, in the stillness of the early morning I have listened to thunder rolling deep from one end of the wide sky to the other, I have stood in a crowd of people from all over the world honoring US Veterans and singing the National Anthem at the base of Mt Rushmore all lit up by night,

 

I have held a hail stone in the palm of my hand that was an inch and a half in diameter, watched the sunset from a boat on a serene mountain lake, shined our flashlight into a secret cave behind a waterfall, was spontaneously given 15 freshly caught trout for our dinner, pulled a handcart at the Martin's Cove memorial and wept for the lives lost in that historic place, driven down a curving mountain road lined with side streets with names like "Ghost Canyon" "Smuggler Lane" or "Grizzly Gulch" only to come to an intersection of "Gideon's" and "Playhouse",

 and I have watched Audrey wolf down handful after handful of foods she has never been able to swallow before in large pieces-- burritos, sausage and eggs, potatoes, watermelon, strawberries. I've been afraid to jinx it by saying this out loud, but she seems to have turned a major corner and must be staying much more open in her esophagus recently. I have had the opportunity this week to feel things on a deeper level with fresh perspective, to examine our life, our family, and myself from numerous angles, to feel or observe nearly every human emotion come out of the process as though someone were shaking out a blanket after a long winter, and to re evaluate things and come out with a fresh and renewed energy and hope. Thank you, especially to Carmen, for making all of that possible, and for your kind and patient understanding that we could never have done it if you had not sorted out all of the details from campsites to food to cooking and equipment and sleeping arrangements for everyone, and for putting up with the craziness of having seven extra people along and all the crazy that went with it. None of us knew for sure until practically the day of departure if it was actually going to be possible, and I'm so glad it worked out in the end that we were all actually able to go! Happy birthday sweet friend and sister, Audrey is blessed to have you for her auntie!

Audrey and her sweet Aunt Carmen

Audrey gave Justin a hand at the wheel as we pulled into our spot at the campground

Audrey and Gideon pulling a handcart at Martin's Cove Handcart Pioneers memorial.

 

Playing at Dinosaur Park in Custer, SD. I fondly remember visiting here as a little girl

Audrey is tickling the belly of the dinosaur!

Some dinosaurs are not so ticklish.

Visiting the friendly burros on the Wilderness Loop highway.

The kids loved visiting Mount Rushmore for the first time!

Taking a break for a delicious pie from "the Purple Pie Place"!

We rented a paddle boat and played all afternoon on the gorgeous Sylvan Lake in the midst of the famous Needles wilderness area.

 

The two babies were troopers through the LONG hours in the car!

We will remember this trip with Justin's family for a lifetime.