Friday, October 31, 2008

It's the Great Pumpkin, Charlie Brown!!

These pictures were taken on the 21st...

Thursday, October 30, 2008

Home Sweet Home

Olivia is chillin' in her crib...

Bronchoscopy images

For those of you interested to see what Olivia's larynx, trachea and bronchial trees look like, feast your eyes upon these...

Click on the pictures to make them larger.

Wednesday, October 29, 2008

Almost done

Olivia got her PICC line placed this morning (it will remain in for 2 weeks). She went into Radiology and the awesome team here got it on the first try. She is back to her adorable self and ready to get home!

Sorry she looks a little sad in the picture - she's just sleepy.

Tuesday, October 28, 2008

Resting after a Rough Day

Olivia is plum tuckered out! She has pretty much been sleeping ever since the procedure. I can't wait for the PICC line to be placed so that I won't have to worry anymore about her being sedated!

Tuesday's procedures

Olivia had her bronch done today. They weren't able to place her PICC line so she will have to be put under again tomorrow. Her Pulmonologist was very happy that we did her bronch now because he said there was a decent amount of quite sticky mucous (which has been sucked out and sent out to see what it grows). I will put up the pictures from bronch once I get a chance to scan them. They had stick her a few times for the IV, but she was under so she didn't feel it. We are just waiting in her room for her to come from Recovery.

Monday, October 27, 2008

One day before she got sick

I just thought it was a cute picture....

Balloon for the Little Tooter

I ran down to the gift shop in the hospital and bought Olivia a "Get Well" balloon since she deserves it. Surprisingly, she hasn't popped it yet!

Tomorrow's events

Olivia is having her bronchoscopy tomorrow at 11 am. They will attempt to do the PICC line during the procedure. The PICC line nurse has been given a "two attempt limit" so that maybe we can get both done at once. They have scheduled her for the PICC line on Wednesday in case they can't get done with the bronch. We're really hoping it can get done tomorrow so she will only be sedated one time.

Keep her in your prayers tonight!

I don't know if you can see it in the picture, but Olivia had been coughing so much she popped some blood vessels in the inner corner of her eye (at least, that's what the doctor said caused it).


There aren't any open slots for her to ger her PICC line today so we are here, at least, one more day. We are waiting for her Pulmonologist to come and talk to us.

For those of you wondering why they can't do the PICC line and bronchoscopy in the same procedure or one thw same day, here's your answer. With her being so little, young and never had a PICC line before, they wanted to do her PICC in a separate procedure in Radiology. They would inject and isotope to "map" her veins and the PICC line nurse would know exactly where to go. This would eliminate the chances af having to try multiple times. The line will start right below or above her elbow travel up and around her shoulder and stop just above her heart, so it's quite long. She can have the line placed while she's getting her bronchoscopy, but as I said they might have to try a couple of times and each time they have to try they lose that vein. We were given the choice and chose two separate procedures to make sure everything would be great with the line since it wiill be in for two weeks.

Sunday, October 26, 2008

News from the Hospital

Olivia's fever has broken (YAHOO) so we will hopefully get some sleep tonight. All of her bloodwork came back okay. The X-Ray did show a patchy area on her right middle lobe (of her lung), which is most likely mucous. They think that the fever was just caused by a virus and the only reason they are being so aggressive is because of her having CF. They don't know if any of this was an exacerbation of the CF. Tomorrow she will be sedated to have a PICC (Peripherally Inserted Central Catheter) line placed in her arm and then on Tuesday she will be sedated again for her bronchoscopy (which was originally scheduled for December 22). I was nervous about Olivia being sedated one time and now to find out it will be twice in two days makes me pretty much a wreck! Everyone please send warm and fuzzy thoughts, hopes and prayers on to her to get better and make it through these two procedures!

Rocking the "Hellboy Arm"

Saturday, October 25, 2008

Trip to the ER

Olivia woke up this morning/night at midnight screaming (not crying), which obviously startled us! She had a fever, but she would,.t keep her arm down for us to get an accurate temperature and we really didn't feel like taking her temperature rectally. She took Tylenol every 4-5 to try to bring her temperature down. After taking her last dose at 2 pm, her temperature had reached 103.1 (this time taken rectally to get an accurate core temperature). The on call doctor told us we needed to bring her to the ER again. We got to the ER and the took a bunch of blood, put her on an IV and took x-rays. The bloodwork came back fine, her temperature finally started to drop, but her X-rays showed a slightly cloudly patch in the right middle lobe of her lungs. So we are now checked into the hospital for 24-48 hours and then she will possibly be on an IV for 2 weeks. I will keep you posted.

Wednesday, October 22, 2008

They should be paying us!!

I know Janie and Jack has cute baby clothes, but my daughter looks so cute in them they should be paying us for her to wear them! My daughter should be a model!!

~Adventures in trying to crawl~

Random Cutie-pieness

Hanging out in her room.

Just chilling in her high chair.

Fun before daycare

Olivia and I were playing before loading her up for daycare and I realized that her outfit (bought by Nana) was too adorable not to be photographed!

Tuesday, October 21, 2008

Mommy's Little Monster

It was cold and this little outfit was nice, warm and fleecy.

And now she's all tuckered out from playing.

Friday, October 17, 2008

What are YOU looking at??

She is just too much!

Some more Daddy lovin'...

Sorry I've been a slacker with pictures this week. These pictures are from Sunday....better late than never I guess.

Mommy's rejoining Weight Watchers this weekend, so maybe one day there will be pictures of me on this blog.

Wednesday, October 15, 2008

RSV shot

Olivia got her first RSV shot today ( Needless to say, she REALLY didn't like it. They had to split her dose into two needles so two nurses came in and stuck both legs simultaneously while mommy held her down. She screamed and screamed for about a minute and then she was calm. She gets her next shot on November 12 (same day as her next clinic). Poor little tooter also has to get the second half of her Flu booster on Friday, so she'll be unhappy again then.

Quick note, we have to pay $30 every shot (once a month for 6 months) as our copay. If insurance didn't cover the shots, each shot would be $800-$1000!!

Monday, October 13, 2008

Quick update...

I just spoke with a member of Olivia's CF team and her first bronchoscopy is scheduled for December 22 at 9 am. Chris and I will have to be at the hospital at 7:30 am for registration. The procedure is supposed to only take about 15 minutes. She will be asleep under a "twilight" and I must admit that makes me nervous. Mostly, I'm concerned about how she will be feeling after the procedure. How sore will her throat be? How numb will the medication make her vocal chords? Are those two things going to freak her out? I know she won't remember any of this, but I'm still a touch worried.

Attack of the Sleepies!!!

Note - I was not aware of how long this video was before I posted it.

Saturday morning fun!

Olivia and I were just sitting on the floor, playing with her toys and watching cartoons.

Friday, October 10, 2008

Zonked out!

We set her down in her Pack 'n' Play so we could do a few things around the house and she has completely fallen asleep...I totally want to crawl in there with her, she looks so cozy!

Pictures from yesterday morning.

I meant to get these pictures up last night, but oh well. I thought Olivia looked so freaking cute in this little dress that my mom got her that I had to take a moment before loading her up for daycare to take a few pictures.

Wednesday, October 8, 2008

Clinic Update - October

We had Clinic today and it was pretty much all good news.

  • Her lungs still sound good and clear. This was fantastic to hear since she has started coughing more frequently.

  • They prescribed Nasacort for her sinus congestion that she's had for almost a month now. Hopefully that will help get the snot out so she can breath a little easier (especially when eating and sleeping)

  • They want us to decrease her Miralax from 3 tsp/day to 2 tsp/day since they think her constipation is under control. This was good news since she has had a lot of blowouts lately!

  • The only change to her feeding is that now we are supposed to give her 2-4 oz of Pedialyte every day (for extra fluid and the salt in it). For her weight, she should be taking in 27 oz of fluid per day and she takes in 24 oz of formula. I was giving her 2-4 oz of water and juice mixture.

  • Chris and I are supposed to start discussing when we want her bronchoscopy to be done ( She is supposed to have her first done sometime between 6 and 12 months and then she will have it done every year from then on. They said if they find bacteria in lungs (which is likely) it will probably be treatable with antibiotice for the first 2 years and then after that she will have to be on an IV for 2 weeks.

  • The most exciting thing that came from clinic was her the change in her BMI.... 28%!!! She was at 17% at her last clinic so they were very pleased with that! Ultimately they would like her at 50%, but this is great progress in a little over 2 months - she was at 3% in August. (Current weight 16 lbs 2 oz. and length 26.5 in.)

Now she gets to play and hang out with Mommy and Daddy for the rest of the day. It is a good day.

Tuesday, October 7, 2008

Keep them in your prayers.

One of the blog families that I follow (Confessions of a CF Husband - has hit a bit of a rough patch. Tricia has been admitted into the ICU @ Duke with what looks like pneumonia.

Please take a moment and send warm thoughts and prayers to Nate, Tricia and Gwyneth!


Thursday, October 2, 2008

Daddy's Little Girl

Olivia loves her daddy so much and has a special smile that she saves just for him. It is complete love and is the sweetest thing in the world!

Look at the loving way they look at each other.

I dub thee Sir Smoochalot.

Wednesday, October 1, 2008

Babbling and Crawling: A Day in the Life...

She's got the babbling down.

She's getting there with the crawling.

I'm a big kid, look what I can do.

Look at Olivia sitting up all by herself! I love when I ask her, "who's the prettiest baby in the world?" and she thinks about it for a second and then raises her hand.

Can you tell that I'm going to be one of those mom's that talks about her kid incessantly to anyone that will listen.