Wednesday, December 2, 2009


It's been awhile...
It's hard to believe that Thanksgiving has come and gone and we're only a couple weeks away from Christmas.. I love this time of year so much. Thanksgiving this year was so full of gratitude. I'm so grateful for my two angels.. One protective big brother and one sweet, spunky little girl. It's been so fun to see them play more together and get excited to see eachother. Bela can hardly wait for Benson to wake up in the morning. She always tries to sneak away and go knock on his door. She'll start up the stairs and I'll ask her where she's going and she'll say 'no,no' because she knows what i'm going to tell her. When he wakes up she squeals and giggles.

She's saying so many words and tries to repeat everything we say. She calls herself 'Wewa' and is usually carrying around her 'bag' or her baby. She's such a girl, her favorite word is 'pretty'. She is still obsessed with Yo Gabba Gabba. She wants to be bigger than she is, she wants to be a big 2 year old, but her tiny little body stops her from doing some 2 year old things. She tries riding her bike, but her legs don't even come close to reaching. I'm pretty sure they don't make bikes for 10 month olds? We very lovingly call her 'little'. She finally reached 19 lbs. As you can imagine, it's very difficult to try to get her eating by mouth and growing at the same time. There's a lot to balance. She needs enough food to grow, but also needs to be hungry enough to want to eat. If I feed her by tube at all during the day she dosn't want to eat. If she could she would survive on snacks every now and then when she feels hungry. A couple pretzels, some goldfish, cheezits. She will usually eat a pretty good breakfast, usually some kind of yogurt and toast, although she's starting to eat eggs, cereal bars, waffles, and pancakes. She likes pudding, mac n cheese, chicken, and snap peas. Very random, I know. She continues to keep me always guessing and wondering, as well as busy. Feeding her continues to be very time consuming. But she has stayed healthy and is somehow full of energy.

Speaking of healthy.. she is healthy until I take her in to get her montly RSV shots. Is any other heart mom as frusterated as I am with RSV shots? We try so hard to keep her healthy (and she has been, thanks to never leaving and serious sanitizing), but then I take her to get that shot and she's sick for a week. Really sick. Horrible, thick congestion, cough, fever, dosn't sleep, no energy. It's like they give her full blown RSV every month. Ugh. I'm seriously tempted to stop (she's supposed to get 4 more). Her reaction combined with my feelings towards vaccines make it very hard for me to take her in there each month. I literally force myself in those doors.
BUT, whats a heart mom to do? Sometimes I wish I wasn't the one who had to make all the decisions for her. But I don't make them alone and I'm grateful for that. Although I still worry about her so much, life has seemed to slow down so much lately and there is so much less stress. It has been wonderful to say the least. With her NG tube gone and her throwing up very minimal, it is like a whole new life. We only have to see the cardiologist every 2 months and she continues to get wonderful feedback from doctors. We couldn't be happier. It's amazing to witness a miracle every day of my life.

Hope you're all having a very merry Christmas time!

Friday, October 2, 2009


We went to the cardiologist yesterday and had another terrific appointment. Bela showed off her new walking skills to everyone and cried whenever anyone got close to her. That's my Bela.. She was up in weight! :) Her current weight is 18 lbs 11 ounces. Maybe by her 2nd bday she'll be legally turned around in her carseat..
She got to skip the echo because when I got there for her echo I was told she didn't have one. She really did there was just some confusion and by the time it was all figured out, it was late and they let us just skip it... I wasn't complanining, although it always nice to know her heart was seen by her doctors. We go back soon enough tho..

Today was day 2 for Tan's trip.. Feels like much more than that. He's in Brasil.. probably on some beautiful beach soaking up the sun. I'm so happy for him to be there.. he deserves it so much.. nothing makes him as happy as Brasil (besides us :)). I only have (ugh) 9 more days to go. I hope I make it through sane. I knew I'd miss him, but I didn't think I'd be so worried about him!
Next year hopefully we'll all join him..

I did wish that he were here about two hours ago when I noticed Bela's button was practically hanging out of her tummy. I tried to pull water out of the balloon that secures it in place and sure enough there was none. So I quickly grabbed a new button and a syringe with water, pulled out the old one and put in the new one. I didn't even have time to think or stress because it had to be done right then and I was the only one around. Since she got it put in I have worried about the day that I'd have to change it myself. IT's been changed once but by the dr. and she did NOT like it. But tonight it was a breeze! She didn't even cry and it was so fast and easy! It's healing nicely and I'm so glad she's got a clean, new button. The balloon on the old one had popped! Kinda scary! I'm glad I was home with my supplies right there or that could've been bad... Makes me want to carry around supplies for it all the time... Or maybe she could just start eating.. Progress is being made. She sits at the table with us and asks for bites. She'll chew them all for about 15 seconds then more often then not spits them out. But some are actually swallowed. She is much more open to putting new things in her mouth tho and trying anything, which is a very good step.

That's about it! Anyone feel free to stop by or call this next week... :)

Wednesday, September 23, 2009

This shirt

At my baby shower for Bela I got gas cards, gift cards, books to read at the hospital, things that you'd get someone in my situation. I mean.. what do you get someone that isn't sure if the baby will live or not?

I also got this shirt..

It is a size 12 month. I don't think I've ever said anything to the person that gave it to me, but getting this shirt meant so much . 12 months! At the time I could only dream and hope that she would someday wear a size 12 month shirt. I hung that shirt in her closet.. it was my hope shirt.

The day it fit her was a day of pure joy for me! We went down to the park that day and saw some friends.. I wanted to share the significance of that little shirt she was wearing, share what that REALLY meant. She has worn this shirt many many times over the last few months. She spilled on it and got it dirty, just like she should. And yesterday I just put this shirt away in a box with all the other clothes that Bela has grown out of..


Wednesday, September 16, 2009

Train park!

They loved the train ride.. Just got a little nervous going through the tunnel..


Friday, September 11, 2009

Paul Cardall got his HEART today!! It's a day to celebrate in the heart world!!

Thursday, September 3, 2009

what we've been doing..

Waking up to this sweet bundle of pink..

The many looks of Benson.

Working on Bensons new batman room:

He loves it!

Playing in shaving cream

At the beach! Bela LOVED it all!

hangin out.

Eating lots and lots by mouth!

Big Ouchy!

Diamondbacks benefit game for the Heart Center.. There was a great turnout!

Tuesday, August 25, 2009