Friday, November 19, 2010

Okay, lets try this again...

So I am horrible. That's an undisputed fact! The reason I am horrible.... its been two months & 3 days since I last posted. No, I didn't fall off the face of the earth. No, I haven't forgotten about any of my bloggy friends - in fact, I truly miss you all terribly! I have been keeping tabs on our extended family:0)

The past couple of months have been quite busy for us here. We've had some things going on that really had me a bit stressed & just not feeling very "bloggy" myself. Well, so as not to bore you all with the details, things are looking up! I'm in a much better frame of mind & am going to make a real attempt at keeping this blog updated in a much more efficient manner! My schedule is smoothing out now. I've been babysitting for about a year & a half for a couple that we go to church with. I've since gained three other little boys in addition to the first little guy that I've been watching & now his sister, too! At any given time I can have as little as one extra kiddo up to 4 to 6 extra kids in the house! Its taken some getting used to, but is quite fun! Its been really good for Vaeh to have other kids here to play with & interact with... not to mention having to share! That's been a good lesson for all the kids to learn.

Speaking of little Miss... she is GREAT!!! I'm sure some of you have seen on facebook, but we had our quarterly date with Dr. Butto. We were able to lower her revatio after her last appointment since her pressures were coming down. At this appointment, everything was right on the mark! She's almost 37 lbs, & just shy of 38 inches. Her blood pressure & O2 sats were nearly perfect (she had a bit of a stuffy nose, so her sats were a tad off that perfect mark). Then came the echo. Miss thing was in rare form for this one. She has done fabulous with them since after her 3rd open heart. Sitting very still, being cooperative. Not this time. Someone was a bit of a squirmy thing & the "troublemaker" showed herself again! Just bringing back memories :0) She didn't cry or anything, but she goofed off quite a bit during the echo this time. Even when Dr. Butto came in to see her.

Usually they have difficulty seeing the PA's on echo, but this time pretty much everything was a bit difficult to visualize. Despite the trouble she gave them, things still are looking great! Her valve looks good (no leakage), & her pressures.... CONTINUE TO COME DOWN!!! So, knowing that, he gave the okay to again lower her revatio to 2 mL every 8 hours! The plan as of right now is to return in 3 months (Feb. 14th) for another follow up with a trip to the cath lab in the spring. The way Dr. Butto voiced it was that he wants to have her off the meds before we go in for the cath so that he can get a true reading for her pressures.

I was so excited after her appointment, even with the knowledge of a return trip to the cath lab. That excitement escalated when I realized that when we get her off of the revatio, Vaeh will be on ABSOLUTELY NO MEDICATION FOR THE FIRST TIME IN HER ENTIRE LIFE!!!!!! I won't know what to do?! I'm already "bored" with things now. Don't get me wrong, I love being bored. But looking back to when we were first told of her defect, & with all of the scares we had in the first year of her life, to think that we are in a place where she will need NO MEDICATION is just amazing! Again, another miracle for our baby! This little girl never ceases to amaze me :0)

I hope all of you are doing well! As the weather turns cold, I pray that you all stay safe & warm! Chat with you all soon!


The Portas said...

GREAT to see an update from you! And GREAT to read all of that wonderful news about Vaeh! Woohoooo! Dropping medication?! And pressures continuing to decrease?! Amazing!

Have a great Thanksgiving! Xo

Wendy said...

Hi Tina!

I was just stopping by to let you know that I was thinking of you and Vaeh....I don't know how I missed your November update, but I did! (So sorry!!!) But...What wonderful news about Vaeh's heart!!! I'm so happy for her and for you!!! Has she had the cath yet? Curious how everything went...

I think when our kids are faced with such life threatening things, we go into "survival mode"...and we live there for so long, that it IS hard to change modes when they're doing better. I can certainly relate! Nevaeh is amazing, and what a blessing and inspiration she is to me and all that know her! I still think about her Mic-Key button being replaced by that Mickey sticker -- I loved seeing that!!! :) Some day maybe we'll be at that point, too...

Well, give that sweet girl and her big sis a hug from us! I hope that you are all doing well!

Lots of Love & Prayers,

Wendy (& Emma, too!)