Monday, August 24, 2009

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!

13 comments:

Auburn said...

What a GREAT report. That is so exciting. She is such a little fighter. I love it! No surgery until 3 or 4 - that is just amazing. Way to go Bela. Good luck with the feeding - I know that is such a trial.

emcghee said...

Ave I am so happy for Bela, and the other three of you. I am so sad for Ethan's family, I can't handle it.

The Simmons Family said...

Avery... I can feel your excitement!!! I am so happy that Bela's heart continues to improve.. that's great!!

As far as the feeds go, I can't wait to hear how it goes. Good luck!!

Andrea

Carrie said...

Yeah for Bela! Good luck this week with letting Bela eat on her own. It was great talking to you yesterday I can't wait for this weather to cool down so we can chat it up at the park soon! :o)

Price Family said...

That's such great news!!!! Yeah!!!

Aimee Hardy said...

That is great news. Congrats! There is nothing better than a good cardiology visit.

Good luck with the feeding. Bela is just so darling. We are big fans.

Aimee
Mom to Jack, 12 months, HLHS

S and K said...

BEST report EVER!!! I'm so glad surgery is been pushed back that far! Bela is one AMAZING MIRACLE, one right after another! I feel like doing some victory laps right now as well. I'm so excited for this new feeding endeavor--I have a feeling it’s going to WORK!!! I'm willing that into reality as I type! :) I'm also glad she is feeling better. We should have the boys play this week---it’s a must!!, the afternoons are........ well un-pleasant! ;)

Stu and Angie Milne said...

such great news! good luck with feeding, i think it's a such a good idea. and maybe she'll go down a little bit for a while but i'm sure she'll learn to take food easier and then gain gain gain! way to go bels! and ave!

k, i'm calling you for this afternoon, maybe you'll be free and we can snap some pictures?

Anonymous said...

All I can say is that Bela is our hero and Avery and Tanner, you are incredible, fabulous, super hero parents. Love you.

likeschocolate said...

Great news!!! She is such a little fighter.

Debi said...

the best news ever! I can't wait til Bela can tell us all what "her secret" is! Such an inspiring little human!

Ali said...

Yes! I am so thrilled/relieved for you. What a blessing.

Melodie Mendivil said...

Way to go Baby Girl!! :) Grrreat update!

P.S. I linked Bela's blog to Scarlett's.
heartbabyscarlett.blogspot.com

Love and Hugs,
Melodie
(mom to Scarlett TOF/PA)