Wiggle Worm

Still trying to keep Olivia under control - she is moving around like crazy. First, her little foot starts going, then her leg up and down, then her head lifts up. She is getting so much stronger, so it seems like a good time to start moving ahead with things. She is still at 9 on her nitric oxide, so they need to get that down to zero. Some of her vent settings are relatively low, but there are also some numbers that are relatively high. Her tummy keeps getting bigger, and she has always had issues with constipation, so that's another thing the docs are addressing. The main issue at hand is trying to figure out why she isn't tolerating laying on her back. Nobody has been able to figure out a reason, and she obviously can't spend the rest of her life on her back, so we'll see what the consensus is on that. I said if they would simply stop doing the blood gases and turn off the monitors, they would have no idea whether or not she is tolerating it or not. They said no. Oh well, she'll get there!

My Brown Eyed Girl..

How exciting! Olivia's been trying to open her eyes. Yesterday, one eye was a little less swollen, so she was able to peek out at us. By last night, even with the heavy swelling, she was able to peek out! It is so nice to be able to see those big brown eyes, even if it's just for a few seconds. She was even able to get down to 40% on her oxygen by this morning and her nitric oxide is down to 10 (with a goal of zero by tomorrow morning)! Yippee!
She's still a strong little girl - even with all she's been through the last 5 weeks. She's been trying to lift her head and tries to kick her little feet up, too. She's making great headway, thanks to all of those amazing prayers!

Kung Fu Panda

We loved the movie yesterday. It was a really good one. It had a good message, was funny, was action-packed (Brooklyn did get a little scared), and very tasteful. They did say "stupid" about 5 minutes into the movie, and Brooklyn was sure to point out very loudly that "they just said the really bad 's' word."
Olivia has had a really good night, again. They were able to wean down her nitric oxide from 40 parts per million to 22 parts per million. She is still moving around quite a bit, which is nice to see. Her eyes are too puffy to open so it wil be very exciting to see her open them one of these days. Everyone says her lungs sound awesome, which is very rare for her. This is all great news! We will continue to take those itty bitty baby steps until we get to where we need to be!

Baby steps, people!

We've always said that in order to keep us happy up here in the PICU, we just need something - anything - done each day. It could be a fluctuation in medication, remove a line, make vent changes, give her a bath, etc... Any change at all keeps me sane for the day. It's the days that absolutely nothing gets done that makes me crazy. Olivia likes to take itty bitty baby steps during her recoveries, so we can accept the small changes. So, the fact that last night she went from 50% to 45% on her oxygen on the vent is great! We'll take it!
Otherwise, the plan for today is to flip her over to her back for a while and see what she thinks of that. If she is good today, they may try to wean down her nitric oxide.
Jack and Brooklyn are very excited about today - Kung Fu Panda opens. So, we are heading to the movies this afternoon. It got good reviews, so we are anxious to see it! We'll have to give our review after we see it and let you know what we thought!

Niabi Zoo trip

We had a great time with friends at the zoo yesterday. It was great to have some mommy time and for the kids to be able to play with some friends, too! We took lots of pictures, but here are just a few:

Olivia even behaved while we were away! She had an excellent day. Last night, she started getting little funny, so they turned her back over to her tummy. No problems from then on! She is even wiggling around a bit today. They are going to give her another transfusion and increase some of her sedation so her blood pressure stays in a reasonable range. So, all is well on the home front!

Are you ready for yet another random act of kindness:

There was a card sitting on top of our computer in Olivia's room today. It was a belated happy anniversary card for Zac and I (we celebrated 8 years of marriage on May 27 - yes, that was Olivia's surgery date as well. At least we'll always remember the date she had her mitral valve replaced!) Anyway, there was a gift card for us to go out and celebrate sometime. "With love, some friends" Well, "friends," Thank You! You have absolutely no idea how much you all mean to us. You make everyday so much easier by making us feel so comfortable with everything - whether it be a good or bad day. You pray with us, pray for us, laugh with us, and even sometimes cry with us (or for us depending on the day;) You care for Olivia as if she were your own, and for that, we are forever grateful. Thank you.

Check this out...

Olivia is still doing unbelievable. She had a great, great night. They turned her back over to her back this morning and she is tolerating it better than ever. Her oxygen sats have been no less than 99% since I've been here. They were able to get her oxygen down to 50% and her rate down to 17! This is huge. But even bigger than that - they turned off the paralytic. I haven't seen her move yet, but we'll see how she tlerates it. Her blood pressure and heart rate don't seem to affected by it so far. We'll keep our fingers crossed...

Grandma is coming to hang out with Olivia for most of the day so I can take the kids to the zoo. We are meeting a bunch of friends from G-burg at Niabi Zoo in the Quad Cities. Should be a fun day to spend with the girls and their kiddos! So, we need Olivia to continue to behave so there are no worries while we are there (and no rain would be nice, too!)

Down, down, down we go!

Olivia had a great night and is having an excellent day! She has tolerated going down on the vent like a champ! The have been able to make quite a few changes with no attitude from Olivia. Keep up the great work, princess!

Brooklyn is 4 today! We woke up first thing this morning and went for breakfast at IHOP. Then to Target to buy a few necessities for her - things she couldn't live without, such as a new outfit for her Barbie and some new Princess underwear. It's an incredibly icky day out today, so a few movies and snacks should keep her happy until this evening when the boys come over this direction and we meet for some ice cream and a few leftover presents!

Happy Birthday, Brooklyn! We love you!

Strong work, pumpkin!

Olivia is having an awesome afternoon! The doctor decided it was time to bite the bullet and give some things a try. So they turned her back over to her tummy, did lots of suctioning, tweaked the vent a little bit, changed a few medication doses, and have actually been able to wean down some on her oxygen. Woohoo!
These are all little baby steps, but we'll take it! Keep up the good work, Livvy!

Picture pages, picture pages

Here are the promised photos from Brooklyn's Beach Bash yesterday. I think we did a pretty good job of creating a beach scene in central Illinois. We had a little pool full of sand for the beach, inflatable beach balls, whales, dolphins, and fish all over the place, a pool full of fish for fishing, and a bounce house (every beach has a bounce house, right?)

Can you believe Jack even lucked out and got a present.

Nice, huh? This has been an ongoing battle between Zac and some friends from Galesburg. Jack's always loved rain boots. Zac can't stand them. The friends get them for him almost every year just to make Zac crazy. It always works!

This is the concert I was entertained with this morning. Jack got Brooklyn all dressed in his clothes. She did vocals on the High School Musical microphone while Jack played the Hannah Montana guitar. Very entertaining. I see definite blackmail possibilities in the future with this photo!

And, so she doesn't feel left out, here is Olivia! This is pre-operation, but this is what people saw when they walked by her room. She would stick her legs straight up in the air and clap them together all the time. Even nurses that didn't know she had been admitted would know as soon as they walked by her room. It's like her little trademark. Can't wait to see it again!

Anyway, Olivia had a really good night and she's having a great morning so far, too. They increased her diuretic again since she is really puffy. The bleeding has pretty much stopped and the surgeon doesn't seem concerned with it. They are also adding a sedation patch today so they can start to see if they can wean some of her IV sedation. And, the biggest news- she pooped last night (first time since Wednesday). Go Livvy!

Come on, Olivia, don't be mad

Olivia decided to behave so we could all enjoy Brooklyn's Beach Bash. Brooklyn had a great time playing with everyone. Stay tuned for pictures...

Olivia must have been mad at me for something this morning. I had a really hard time leaving her today because she just wasn't looking good. She was acting up again and causing problems. I left, mom came in, and she turned into a completely different child. She had a perfect afternoon (all things considered). We'll hope now that I'm back this evening, she's done being mad and will continue to be good.

For those not around the area, the Children's Miracle Network raised over 2.2 million dollars today!!! Thanks to all who donated in Olivia's honor!

Children's Miracle Network

It's the telethon today benefiting the Children's Miracle Network of Illinois. The TOUCH hour (the Organization for Understanding Children's Hearts) is from 3-4 this afternoon. Some of Olivia's doctors and nurses will be answering phones off and on today if you would like to call and donate. You can call anytime and you can even donate in honor of Olivia if you would like. All donations directly benefit the Children's Hospital of Illinois and the Children's Miracle Network. So, if you are in the giving mood, feel free to give 'em a call. The local number is (309) 662-4970. If you are local, it's on News Channel 25 (WEEK). No pressure - just wanted to give the CMN and the CHOI a little plug for the day!

Bloody mess.

Olivia is still bleeding. I think the goal for the day will be to find out why she is bleeding and where is she bleeding from. They are now weighing the gauze that is collecting the bloody mess and she did bleed a little over an ounce throughout the night. That's too much. The bleeding from her nose has slowed down, but not so much from the chest tube site. We'll cross our fingers that they get this all figured out soon.
Otherwise, her numbers are all good regarding her heart rate, blood pressure, oxygen sats, etc... You just can't have it all when it comes to Olivia. They should be doing rounds soon, so I'll post again if anything worth mentioning comes from it.

On another note: today is the big birthday party for Brooklyn. I'll take lots of pictures and post those later. She's having a beach party at Grandpa and Grandma's house and is super excited to be turning four. We've already told her that four-year-olds don't whine, don't have prissy attitudes, and don't cry when someone looks at you funny, so we are all excited for this increase in age, as well.