21 days?!

Right after we came home from the hospital we received a heart monitor for Livie to wear. The cardiologist at Primary's who saw Livie had mentioned that she would need to wear one for a little while. She said we would receive one after we got home. I didn't think too much of it...

Then we received a big ol package in the mail...full of heart monitor stuff. Okay, no biggie, I'll get it figured out and put it on Livie...Um yeah right, I had to call the 1-800 support phone number more than once, but with their help I finally figured out how the monitor is supposed to work. Livie has to wear this monitor 24/7 and she has to have a cell phone (that reads the monitor) within 10 feet of her at ALL times. If the cell phone gets too far away from her or one of her heart leads isn't picking up a strong enough signal then the monitor goes off and starts beeping. Kind of a pain! The whole time I'm thinking, good thing Livie only has to do this for a couple days...until the man helping me on the phone says, hopefully the next 21 days go by quick for ya...
Um excuse me sir, but WHAT?! 21 DAYS?!?

Yep, Livie has to wear this at all times for 21 looong days...

Its not very big, just very touchy and beep-y!! But Livie loves that is comes with a cell phone that's constantly going off! (;

*little update: Livie's lungs are sounding a lot better, she still has some junk in them and she still has to use her breathing treatments, but hopefully when the weather warms up she won't have to use her breathing treatments so often.

We are really loving the new area we live in and now that Livie is feeling better we're finally getting out of the house (heart monitor and all!) and taking advantage of the nicer weather.

Livie is still sportin her pink high heels!!

This pic is from our last weekend when the girls came down to see Livie Bug. Gotta love Liv's face!!

Livie and Auntie Ashley



Now that we live a lot closer to Michele, we get to see her more often (:



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Happy Saint Patricks Day!!!!





Livie woke up to a breakfast of GREEN!! She thought it was pretty cool eating green waffles and green syrup!



Then we went to the park and played with some friends
Love my girl!

Home sweet home

We are home and Livie is doing very well! We ended up spending 4 days at Priamary's and they let Livie go home with oxygen for night time.

It feels so good to be home! My mom and Livie's Aunt Shayla came down for the weekend and spoiled her, I think its just the medicine she needed (: She's bounced back very well.

Oh and we found a pediatrician, the doctor who treated Livie while we were at Primary's happens to be a pediatrician who happens to work at the clinic right by our house. And now he's familiar with Livie's extensive medical history. Perfect.

Livies G-ma got her some little play high heels...and Livie hasn't taken them off since. She LOVES them.

(Pay no mind to the spaghetti on Livie's face that her mom didn't wash off ;)

Posing with Aunt Shayla

Doing what Livie does best....EATING!! Yum!!

These are pics from Livie's last day at preschool in Idaho. She love love loved preschool!

Such a big girl!!

Stillll here!

Livie didn't handle last night very well and had to be on oxygen the whole night and even with oxygen had a hard time keeping her SATs up. She did worse last night than the night before...silly Livie, doesn't she know she's supposed to be getting better so we can go home!?!
Livie had a long day yesterday, but did well with her breathing during the day, it's nighttime that really gets her.
We've gone home on oxygen before, but the doctor doesn't feel like Livie is even ready for that yet. She has been keeping the doctor on his toes, so he doesn't quite trust her, ha.
So while we're spending our days here at Primary's the Dr thought we should at least take care of some of those upcoming appointments Livie had scheduled, so yesterday Livie had her EEG, EKG and some other heart stuff done. It was a busy day, but glad we got so much done.

We're off to the bathtub right now, because just maybe I still haven't washed Livie's hair after all the EEG leads were glued in. (Her hair is a crazy mess, hopefully they keep de-tangler in stock here! ;)

Dang RSV!!

Miss Livie bug is having a better day today, night time was a bit rough, but today is a little better breathing wise. She still can't go without oxygen when she's sleeping, but she's been off of it when she's awake...so that's a little progress, and we like progress (:

Livie is back on heavy doses of steroids...boo! They told me to expect the awful mood swings and lots of water retention that the lovely roids cause. She was just finally thinning out too from all the steroids she's been on in the past. Oh well, I'm not going to lie, I did love kissing her chubby little cheeks and pinching her cute, dimpled bum!! haha (;

The Dr. said we'll see how Livie handles tonight and go from there...

Oh no!!!

Well, we have only been in Utah for 3 days and Alyvia decided to get acquainted with the hospital staff down here.
She got really sick today and it happened so fast. Her lungs were having a really hard time, she was wheezing so much she could barely breathe. Her breathing was so labored I decided to take her to the hospital closest to our house. We went to the ER, since she was struggling so much with breathing they got her in right away. Her oxygen was at 71 (it should be in the high 90's) They called respiratory in right away and did some breathing treatments and gave her some steroids and then tested her for RSV...sure enough she does indeed have RSV, dang it. And its really taken a toll on Livie's lungs since she's had lung disease.
Livie was still really struggling with breathing even after Respiratory worked on her. The doctor told me that Livie was really sick and needed to be admitted, especially with her history of lung disease (ARDS)
So off we went in the ambulance to be admitted to...Primary's!
And that's where we are now.
We don't love being at hospitals, but we sure do love the nurses here (: they always take really good care of Liv.

Right now Livie's SAT's are stabilized (phew) But the RSV is going to have to run its course and meanwhile Livie has to be on oxygen...so as long as she has to be on oxygen she has to be here in the hospital. I'm just hoping things don't get worse. Livie's had a rough day today, but she really is a trooper. One of the nurses even commented how before they saw Alyvia and received the admit for her they went through her extensive medical history and were expecting a little girl with a lot of handicaps and problems, not spunky little Liv!!! (:

Private blog?

I was going to make our blog a private one, but I just realized you can only invite so many readers to view your blog. So then I would have to pick and choose who I wanted to invite to this blog...and from reading the comments I was so touched by all the people who love and care about Alyvia.
So rather than pick and choose, I will be leaving my blog open for now, sorry for the hassle!

**Quick update, we are all moved in, phew!! And really like our new place (:
Livie has a few upcoming appts at Primarys this month...
She saw her neurologist here, he was concerned about her hospital stays and wants to rule out whether or not Livie did indeed have a stroke, so she is scheduled for another MRI, ahhh. (This one will be a little different than her past MRI's so that they can see whether or not she has blood clots, but she'll still have to be put out with general anesthesia)
Then she needs an EEG (a bunch of wires put on her head and monitor her brain waves, this one's not too big a deal...more of a routine check up)
Then she needs to have a sleep study (another routine check up since she has central sleep apnea)
And lastly, Livie has an appt with a cardiologist....yes, a heart doctor. Another ahhh. Hopefully its not a big deal, Livie has some issues with her heart beat, she has every since she had brain surgery last year, but its getting slowly worse, so we're going to have it checked out and hopefully its nothing we really need to worry about.

So its going to be a busy month for us at Primary's...I sure am glad we live a lot closer now (: