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."