Cardiology

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... :)

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..

Amazing...

Train park!

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








Swinging!

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

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!

Cardiology visit

Cardiology update

Thursday's cardiology visit was great! For the past year or so we've been watching a leaky valve and the pressure in her aortic arch. For a little while there they were both considered moderate/severe, and there was talk of cath and talk of early surgery (20-24 months). The last few visits is went from moderate/severe to moderate to moderate/mild, and then on Thursday, completley MILD!! Beth asked us what our secret was, and Dr. Pophal said her echo looked fabulous, better than it's ever looked. If you've ever taken your baby in with that nervous pit in your stomach then you know what hearing that feels like! I wanted to take a couple victory laps around the office! I thought there was a good chance an upcoming surgery might be tentatively scheduled for the next couple months, and the thought of having that planned was just making me sick. But Beth told us that there was no way they were going to do anything with Bela looking as good as she does. Her heart just keeps looking better and better, and so there is absolutley no reason to do anything right now!! HORRAY!! They said MAYBE when she's 3 or 4, but not to even think about it for a long time!
Weight wise she was only up a few ounces, but she was up. I am going to consider that good. Beth isn't worried about her weight anymore and so neither am I. With regards to eating, I am going to start a feeding journal for her that I will be posting. I am going to be aggresively working with her oral eating. I think she is ready. There are a variety of foods she will eat now, and she is eating enough on her own to push her. I am not going to put anything (besides meds) into her tube during the day. I am just going to let Bela eat when she wants and how much she wants and write it all down. Of course there will be lots of assistance and some pushing (no forcing), if Bela really only ate what she wanted to eat it would be an ounce at each meal. It is going to be a lot of work for both of us, but we're going to see what happens. At night I'll give her an extra feed or two when she is asleep to get a little more calorie in her, but during the day she'll be eating all on her own. I did a couple trial runs last week and she did awesome, til she got sick. Her cold is pretty much gone now so yesterday was our first official day. Here we go.. Wish us luck!