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.