Random cuteness

Olivia fell at daycare on Monday, so she has a little bruise on her forehead.

Here she is babbling up a storm. 

Happy Anniversary, My Love!

Today is Chris and my 2 year wedding anniversary!! In honor of our anniversary, I'm going to post some of my favorite "love-related" quotes - all dedicated to the most wonderful man that I have ever known. I love you, Sushi!!

"To love and be loved is to feel the sun from both sides." - David Viscott

"It doesn't matter if the guy is perfect or the girl is perfect, as long as they are perfect for each other." - Good Will Hunting

"There is always some madness in love. But there is also always some reason in madness." - Friedrich Nietzche

"To love is to receive a glimpse of heaven." - Karen Sunde

This quote works for Chris and Olivia...

"When they ask me what I liked best, I'll tell them it was you." - City Of Angels

The "Tooty" Professor

Here is Olivia wearing Chris's glasses....

Sinus issues...Any helpful ideas?

Olivia has a super snotty nose right now (not the first time). This snot is what I assume ectoplasm would be like. When she sneezes, it shoots out of her nose then slingshots back onto her face (which she REALLY doesn't like). It's not drippy at all, just very sticky - I can literally pull it off of her face in one "piece". I do not profess to be an expert on snot, so I don't know if this is what all baby snot is like or if this is because she has CF. Months ago, we had to go to the ER for sinus congestion and they recommended we invest in a Battery-powered Nasal Aspirator(which we bought from Walmart for $19.95)

We still use the bulb syringe when we put the saline in her nose and follow with her Nasacort once a day. When you need to just quickly suck the snot out of your baby's or toddler's head and don't feel like fighting them, this thing is a godsend (it even plays music)!

Anyway, she has been coughing all night and tons in the morning. She isn't getting good nights sleep whenever her nose is like this, which in turn has me staring at the monitor all night. If it gets bad, I go in an give her a Xopenex treatment just so she can breathe easier, but all the gunk is still settling in her chest. She isn't breathing well when she sleeps or eats, which can obviously be a problem. Does anyone have any suggestions on how to help her?

Puffy Snow Suit!!!

On Tuesday (after a decent snowfall for Knoxville), we decided that we should put Olivia in her snowsuit so she would be nice and toasty warm. She barely fit in her car seat and could not move her arms an inch. It's was the funniest/cutest thing I had seen in a while so I felt it necessary to grab the camera.

I got an award

Cindy from Cure CF 4 Reilly gave me a One Lovely Blog Award! I am to send it to my new blog friends, and they are to pass it along to their new blog friends. It should go to those who step outside their comfort zone, and make new bloggy friends.

I don't know if I'm only supposed to send it to people who haven't received it yet....

I send it to:

Cara
Jessie
Julie
Phoenix's Mom
The Smithson Family

I hope you all have a great day and stay warm!!

Profile name change

I decided to change my profile name from Piglet's Mommy to Tooter's Mommy. We don't call her Piglet anymore so I decided to change to her most common nickname. She actually gets called many derivations of Tooter (i.e. Tooter McTooty, Tooterificus, Tootertastic, etc.).

Olivia's First Snow

I forgot to post these last week

Olivia is playing with her Laugh and Learn Kitchen. 

Some quick info...

I'm just copying and pasting from an e-mail sent from a member of our CF Team...

"I received info on a webcast that will be presented by Beth Surian,JD, who is an attorney and director of the CF Legal Information Hotline. (Access her info through cff.org).  It will cover CF and Ins. issues.  Let's try to spread the word to all those we know.

Go to: www.medconference.net/cfhealthcoverage for a listing of times/dates and to register.   {Date options range from Jan.13 through Jan. 30}.
** I did not call to inquire if pt/families could log on but I would certainly hope they could."

Just for fun

I thought I would show you how huge I was at the end of my pregnancy - I gained 70+ pounds!! It was completely not my doing - around 20-22 weeks Olivia stopped processing the fluid resulting in polyhydramnios most likely because of her meconium ileus. I included two pictures from Chris and my wedding (because they're sweet) as the "before" pictures.

Ohhh, aren't they nice? I walked down the aisle to Elvis' "Can't Help Fallin' in Love". (taken on 1/27/07)

And the room let out a collective gasp at the sight of her belly...(taken on 3/9/08)

I swallowed a...uh....some type of HUGE ball.....(taken 3/10/08)

And then I met my reason for being....Olivia Shea was born at 5:28pm. She weighed 9lbs 3oz and was 21 inches long. She was 7lbs 14 oz after she passed all of the meconium.

Oh, now wasn't that fun?

As promised...

Here a few pictures that I took with my cellphone. Olivia was all tuckered out after her bath so she's napping with Lily Mae. I wish I had a cozy lap and stuffed frog to curl up on/with!!

I just noticed.

Too many posts without pictures/video. I will take some tonight and add later.

YAHOOOOO!!!!

NO PSEUDOMONAS GREW!!!

Her nurse practitioner called yesterday to go over some info with me and told me that Olivia's cultures grew nothing, but they would probably check her sputum at her monthly clinic for the next couple of months. I'm so happy she won't have to be bronched or have to deal with the PICC line for a little while longer.

Some of the stuff that she went over with me were my own issues. One such issue, I told her I didn't want them to dread hearing me on the voicemail (because I call for everything) to which she responded very simply, "Does it matter?" I said, "well...not really". She told me if they have a problem with me calling, that's THEIR problem. I need to be their "second brain" since they have 130-150 patients and I have one Olivia. I really LOVE our team. They are always so patient with me and all my questions. Her nurse specialist (I'm not saying names because I don't know if it's allowed) came and helped us look at day cares before I went back to work to help us decide which would be best for our daughter. She's come out to teach daycare how to do Olivia's Xopenex treatments (with the Aerochamber) and CPT and she's coming out again to teach them how to use the nebulizer. They are so helpful and I must say, we are so fortunate live so close to her CF Center (only 20 minutes from home). ETCH Pediatric Pulmonology, YOU ROCK!!!

http://www.pedslungs.com/staff.htm

This past weekend...

Olivia, for whatever reason, did not sleep well any night last week. I'm not sure what was the cause, but Friday night when she started tossing and whimpering Mommy decided they needed some decent night sleep. I did something I NEVER do, I let her sleep in bed with us. Daddy and Olivia got a good night sleep, but I learned that Olivia tosses, turns and kicks ALL NIGHT LONG!! So instead of hearing small movements and little whimperover the monitor, I spent the entire night getting kicked and treated like some sort of springboard. When I woke up, Chris informed me that the backlight was out on our laptop. We decided on Sunday that we would just get a new computer since the laptop was 5 years old. First we went to Circuit City and almost bought an HP desktop, but we decided to see what Best Buy had to offer. They had the same HP (and would match CC's price), but they also now carry Apples. I wondered if I could talk Chris into changing operating systems....(MWAHAHAHA). So now we have an iMAC!! I'm so excited and can't wait to play tonight. Ok, so I need to backtrack a little. On Saturday, we were heading out to run some errands and were sitting at an intersection when Olivia started coughing. Chris was looking at her refelction off the "baby mirror" in the rearview to make sure she was ok when she vomited (not spit up - full on barf). I scrambled back there and was quickly grabbing anything I could to mop it up when she vomited again. It was everywhere!! So we got home as quickly as we could and scratched the idea of running errands. She had no fever and after a bath was all better. No clue what happened. Sunday, Olivia was doing great. We were heading home from buying the computer and she started coughing again. So again Chris was watching her in the rear view to make sure she was ok and, that's right, she vomited again. So again, we got her home, took her temperature (no fever), gave her another bathe, hosed down the car seat and base and washed anything that could go in the washing machine. She was fine again after vomiting. We increased her Creon 5 and the doctor told us to up her Miralax until her system adjusts and I guess we need to add more Miralax because she isn't pooping near as much as normal. The only thing we can figure is that she's constipated and the food doesn't have any room to digest. Obviously, we aren't doctors, but her doctor told me to keep her near diarrhea for the first few days and I totally didn't do that! Bad mommy. It's now Tuesday and she hasn't thrown up since Sunday, but she still hasn't gone to the bathroom much either. Hopefully her tummy will get all squared away soon.

Parent Advisory Committee - Meeting 1

Sorry that it's taken me so long to post about the awesome meeting we attended. More about this weekend in the next post. We had Olivia with us so only one of us was in the room at a time so I had to wait for a copy of the notes. The group consists of 3 CF Team members and about 15 CF families. It was great for us to meet other families that we will be able to draw from their experience (from CF care, insurance questions, daily life, etc.). For the sake of time, I'm going to just copy and paste info from the meeting notes that were e-mailed to me.

1st identified was a need for family communication groups or support groups
Ø Advocacy for issues i.e.: insurance. Decided to identify everyone’s strengths and be available for new/existing families
Ø Come up with a family resource book and have representatives available to other families
Ø Put together a guide of families who wish to participate
Ø Look at insurance issues
Ø Put together informational meetings based on described needs
Ø Hold educational meetings i.e.: school issues
Ø Identify for families what they can expect from team/center and make this information available
Ø Identify means of communication for all families
Ø Disseminate appropriate information compiled in one place (i.e. books, articles on trials, etc), handouts
Ø Kids section for the patients in newsletter as well as this information.

Overall agreement was that the group would need to get together to discuss and get to know each other’s strengths and then begin working on a communication brochure for families.

Other information to include from the meeting is that ultimate goal is for this committee to become a functioning group without need of East Tenneessee Children's Hospital staff but that ETCH staff will be there to provide resources and help as needed. Also, that eventually one member from this committee will sit on the larger hospital Family Advisory Committee to give a voice to the CF Center patient and families.

We have our next meeting January 22.

Clinic Update - January

We had Clinic today and were kind of expecting it to go as well as they have been at the last few.

Let's start with the lungs.

• The doctor we met with today informed us that Olivia started growing pseudmonas in her last sputum sample (I'm not sure if it was from the Salmonella ER visit or last clinic), which she has never grown before.
• They took another sample today and depending on the results she might be getting another bronchoscopy, then depending on the results of that placed on another PICC line.
• They aren't sure if the pseudomonas are growing in her airway or lungs (yet) so they decided to start her on TOBI.
• Her Hypertonic Saline was changed to 7% and twice a day, so we had to get a second nebulizer so that daycare could help with the treatments (which they have told us they will gladly do).

Now onto Digestion.

• They want her Creon 5 increased to 2 before each meal (she currently takes 1-1.5 depending on the size of meal).
• They increased her Miralax so that she doesn't start cramping, getting gas and/or constipated with the change to her enzymes.
• They want her solid food intake increased, but that's a slow process since she's just gotten over the Salmonella.

The Respiratory Therapist and Physical Therapist gave a thumbs up.

I'm a little down from the news. Our Clinic has a started a Parental Advisory Committee (that we signed up for) and the first meeting is tonight. I don't know exactly what we'll be doing, but maybe I will be in better spirits after.

A new smile...

Olivia debuted a new smile for us on Monday and Tuesday night Chris was able to get pictures of it. Watch it grow...

Evil Salmonella Poisoning!

After a week of off-and-on fever, horrible diarrhea (smell/appearance/quantity), vomiting for one very long night and not being able to feed her for TWO DAYS, Olivia is back to her normal wonderful self. She is still having the bowel issues, which according to the Department of Health could take MONTHS to go back to normal. She ended up testing positive for salmonella poisoning and we will never know exactly how she got it, but it's over (knock on/touch wood).

Olivia's BIGGEST Christmas present

Finally taken out of the box....

Christmas #2 - Bebe and Papa

More Houston pictures...