Tuesday, July 29, 2008

Fun at the Fair!

Look at the bunnies!

Giddy up, horsey!

Sissy on the ponies, too!

We took the kids to the fair yesterday! My Great Aunt is back visiting from California & brought a couple of her grandkids along. So my Mom, my Great Aunt & myself took 7 kids out to the county fair. The fairgrounds are literally around the corner & down the road a ways from our house. So we loaded everyone up & went over for the experience. With 7 kids in tow it was quite the experience!

Vaeh was able to see her first animals other than Sasha, the family cat! We got her close enough to pet a bunny, & we even saw a piglet that was so tiny! Some of the kids got to feed the piglet a bottle! They had camels for the circus that were out, & of course all of the animals that kids in 4-H show as exhibits. Then it was off to the rides.

The older girls went on some of the bigger rides, like things that go up side down & tilt & spin... not my cup of tea! Then we had to ride the ponies! Gabby has always loved them, but this year with Vaeh actually able to get out I figured we'd give it a shot. I've been thinking about getting her into an equestrian therapy program here locally, but she isn't old enough, so this was sort of a trial run! She had a look of uncertainty at first, but once they started moving she seemed to enjoy herself quite a bit! That little squeel & laugh all in one! I just love it! All of the kids had a great time playing & running around! It was another more "normal" moment in our lives!

On another side note, our little friend Elaina is looking at going HOME this week, possibly on Thursday! So please say a quick little prayer that all continues to go well for this sweet little girl! We also have a new little heart friend, Brody, that just had surgery today & so far is doing well! Please keep him & his family in your prayers!

Wednesday, July 23, 2008

Pigging out!!

Gimme some of that!



Thank You!!


So Vaeh is really taking off on the eating front. She's still a little picky about what she'll eat, which is an adjustment for me. Gabby was the least picky baby when it came to eating. Now she's started the picky-ness. But Vaeh is so limited at this point with what she can eat. She doesn't really want baby food at this point. She's almost bored with it. She eats the toddler cheese/ fruit puffs like crazy! I bought a can of them on Sunday & by Tuesday afternoon the entire can was GONE!

We've been getting more adventurous with what we give her. Over the weekend, we had a little get together with family in from out of town. When eating, there wasn't much to give Vaeh, but there was potato salad. There was a little smooth 'sauce' on it that she loved! She's also had a little bit of bagel yesterday (the soft inside!). And today, as you can see in the pictures above, she had a bit of pizza crust! Amongst all of the cheese/ fruit puffs & crackers she's had today! It was increadible, she took enough calories by mouth that we were able to skip an entire feeding! There is a light at the end of the tunnel!!

The other pictures are Vaeh displaying her vast signing vocabulary - which consists of about 5 words! We just started introducing signing a few weeks ago, but she is catching on quite quickly! I need to start introducing other words to her! She is so cute when she signs 'more, please' when we're eating. Its so nice not to hear her screeching & instead signing what she wants & there's no confusion!

On a quick update note, little Elaina is improving steadily & they've even begun preliminary talk of her going home! Of course, she still has a bump or two in the road to over come, but she is well on her way! Another little friend of ours, Kaitlyn just had a heart cath & as a result will be scheduled in the near future for her next open heart. Her parents are hoping that they can also begin to wean her from her ventilator soon! Please continue to keep these beauties, & all our little heart friends in your prayers! Hope everyone is having a great summer!

Sunday, July 20, 2008

Beating the heat!

Sharing with Sissy!

Can I have some of yours, Mommy?

I'm waiting!!

What's this stuff doing on my face?!

Its been quite hot around here over the past few days. So for the most part we've been camping out in the air conditioning to stay cool, espcially since Vaeh doesn't handle the heat very well at all! For an afternoon treat today, I had gotten some Drumstick ice cream cones at the grocery & what better reason to have one than to cool off! Of course as soon as the freezer drawer opened, both girls make a bee line for the kitchen.

Gabby: "I want a mint one, Mommy!"

Vaeh: "Eaahhh" (translation I want one too!)

So the girls in the house proceded to have a cool treat! As you can see by the pictures, they both enjoyed their treat, especially since bellies are feeling much better around here! I think Vaeh is really getting the hang of this 'eating' thing. She really seems quite interested in eating almost anything - as long as its not baby food! She is still in the beginning stages of handling much texture, but is VERY willing to try things. She really likes her cheese puffs (Gerber Graduates), but when you offer 'baby food' she refuses it. I think that she's really liking the stronger tastes & baby food is just to bland for her! So I guess I'll have to invest in a mini-blender to mash up "real food" so that she'll start to eat vs. being tube fed the majority of her calories for the day!

Otherwise, the girls have been having fun playing with their cousins & getting to know some family that's here on vacation from the west coast (LA area). Hope everyone is having a good summer & enjoying it. It will be gone before we know it... too soon!

Friday, July 18, 2008

"The yuckies"

Its been a "fun" (yes - pun intended!) few days around here this week. It all started on Monday when Gabby stayed with my cousin & his wife for the day. Their oldest boy ended up getting sick in the afternoon, but they thought maybe he'd been playing too hard, etc. We would soon find out that it wasn't that at all.

Tuesday we had a fairly good day & even got to see Daddy for a little bit in the evening. We took him back out to his semi & headed home to get ready for bed. Within 5 minutes of getting home, Gabby tells me her "belly hurts." I knew that before too long she would get sick; just how she works! Sure enough, about 20 minutes later she vomited. We were in for a long night, as she ended up getting sick about 4 or 5 times throughout the night.

To make the evening more fun, Vaeh decided to join the party about 2:30 AM - bringing up at least an hours worth of feeds. So, needless to day, I had Vaeh in the bath tub & we moved out to the living room to camp out as my bed linnens needed washed. Poor girls, both with "the yuckies."

Well, I'll say one thing for my girls, they are generous! Mommy ended up with nausea, amongst other stomach symptoms. After a day of Mommy not feeling good at all, we're all starting to get back to a normal feeling around the house. I just hope that we don't pass it around to anyone else.

On a different note, I was checking in on our heart friends & saw a post on the Baker family's (Gracie B on the right side of our blog) site. She had seen a post on another blog about emailing Oprah about doing a show on CHD awareness. If someone like Oprah would do a show to bring awareness about CHD's, imagine how many people it would reach!?!

So, in the spirit of those other posts, here's a link to email Oprah about doing a show on CHD awareness. If enough people (those affected directly or family members & friends who are affected indirectly) send an email, it may trigger something in the Oprah world to bring awareness to CHD!! Here's the link:

Monday, July 14, 2008

Belated anniversary!

Okay, so I got so caught up in the summer fun that I forgot that last Wednesday was Vaeh's 1st anniversary of her 2nd open heart! There's so many things that she's had done, but this was one of the major things so I think it deserves mentioning. At this point last year, she was still on the vent after the surgery. Her lungs were still much more problematic than they are now! I just love looking at her & thinking of where she's come from. She's made so many accomplishments. I'm sure she's going to keep up with that tradition.

As for today, we had our monthly date with Dr. Butto, & someone was almost flurtatious with him! I never thought she'd be that way with him, but she was actually playing with his belt today as he stood beside her reviewing her echo. She was playing with a toy, & happened to see his pager & phone on his belt. Well, if there's one thing that will get Vaeh's attention, its a cell phone! The appointment went well. Her RV (right ventricle for all you non heart folks:0)) pressures continue to come down. This tells us that the oxygen is still much needed, so we have our friedly little tube to follow us for a while longer! He also said that her blood work looked good & we could go down to 2 doses of lasix vs. 3 per day. We are also allowed to start weaning her aerosol treatments to as needed. But here's the great part... 2 months for the next visit! We've never gone that long without seeing him unless she's been scheduled for surgery. Dr. Butto's thinking probably in the fall for her angioplasty. She just keeps 'wow-ing' them & I love it.

We then spent the rest of the afternoon waiting around the hospital. This time it wasn't for Vaeh, though! Great Grandpa (my Grandpa) had a lumbar fusion with rodding today. So we waited with some of our family to see that he was doing okay & then headed home. As we were walking out, we were able to see life flight take off from the heliport (on top one of the hospital buildings). It was quite neat to see knowing that Vaeh wasn't on it this time! While we were at the hospital, Gabby got to play with her cousins which made her quite happy! Hope everyone had a good weekend!

Thursday, July 10, 2008

Sit ups!

**make sure you scroll down & pause the music so you can here the girls giggle!

Little Miss Vaeh is really on the move since her latest surgery. We're now 8 weeks post op & she's all over the place! She's been scooting on her bum around the house for quite some time (much to the dismay of her therapists!). She's been able to sit up with a little bit of help just to get the movement started, but once on her way she did it pretty much on her own. So up until yesterday, I was perfectly able to let her lay in the middle of the floor & get up to get something knowing that she'd be in the same spot she was when I left her. Yesterday afternoon I did just that. I put her on the floor to change her pants & had to get up for a diaper. So when I looked back & she wasn't there I was quite suprised. Here she was across the room! So of course, I had to make her repeat it. I laid her down on the floor & watched as she rolled to her side & then sat up! Yea, Nevaeh!!

Once she figured out that she could do it, it became our newest game. So for most of the afternoon & evening yesterday, she & Gabby spent it lying down & sitting back up! She is making such progress that its almost scary! First the eating, now this. Before we know it she'll be, dare I say it... walking!

Wednesday, July 9, 2008

Sleeping Beauty!

Vaeh is starting to blossom in so many ways, & is becoming "normal." That is such a great word, & one I never thought I would use when speaking about my little 'reflection of heaven'. She is continuing to try new textures with eating. She even at some small bites from a breadstick at Fazoli's the other day, as well as drank from Mommy's cup! Every new thing she does just makes me smile & at times cry! (I know, what a sap I am!)

Today when I put her down for her nap, her little chair that she usually naps in (it lays flat) was out of comission. So I figured I would lay her in her crib, but the sheet that goes over her wedge was in the washer. Okay, another new first...

(Yes, this is her normal sleeping position!)

This is the first time that Vaeh has been asleep in her crib flat!! We've always had her propped up on an incline because she had such horrible reflux. But since her latest open heart, she hasn't been refluxing, so I figured we'd give it a try. Granted, she's not on her feeding pump but its a start!

On another note, our little heart friend Elaina is still battling for her life. The doctors haven't given her momma (Hollie) much hope, but thank goodness she is looking to God for that! She is showing small signs of improvement. So please continue to keep their family lifted up in prayer!

Sunday, July 6, 2008

My first blog award!!

I was given the honor of a blog award by Amber, mommy to Grace (aka: Gracie B in our link list!). Grace is another precious little one who is a member of our "heart friends' family!" So, thank you both, Amber & Grace for honoring me with this award. And on my birthday no less!

Since this is an award that's being passed on, here is who I'd like to honor with it!

1. Arianna She & her mommy, Vanessa, are the first "heart friends" I made after discovering the world of CHD. Vanessa is such an inspiration to me, as she has become instrumental in starting a support group in her area (Mended Little Hearts, Tuscon)!

2. Elijah (Megan)This little man has the same twist on the TOF that Vaeh has. He has underwent 2 open heart surgeries & is now making his Momma & Daddy enjoy some of the normal things in life!

3. Isaac (Kathy)What a cutie pie! A little guy that I just can't get enough of reading what his Mommy goes through in a day's time with 3 boys! Isaac just recently had his cleft palate repaired & is making leaps & bounds!

4. Bilal (Mina)After having open heart at just 8 weeks old, he is now the epitome of health! And according to posts on their blog, is causing as much rucus as the next 'normal' little guy.

5. Angel Kate (Krista)Even though I came to know this little angel after she went home to be with her Heavenly Father, I've fallen for her family! They have taken the tragedy of losing a precious little miracle & turned it into smiles for so many other families that have children in the hospital. Such an inspiration to all!

Okay, so to those of you that I picked, if you want to honor any blogs that you feel are deserving, here's what you do:

1. First, pick five blogs that you think are deserving of this award for their creativity, design, interesting material, and also for contributing to the blogging community, no matter what language.

2. Included in each award must be the name of the author and a link to his or her blog to be visited by everyone.

3. Each award winner must show the award and put the name and link to the blog that has given her or him the award itself.

Happy Birthday!!

Just a wanted to say HAPPY BIRTHDAY MOMMY!!!! We Love You!! Love Vaeh and Gabby!!
HAPPY BIRTHDAY to the Love of my Life!!! I Love You!! Jon

Thursday, July 3, 2008

Eating bunches!


Ahh, this tastes good!

EMPTY! She at a whole jar of bananas!

Ever since the day we brought her home from the hospital, she has been trying so many things. We started with graham crackers softened in milk, & she's now progressed to cheese puffs & even noodles! She only occasionally gags when she gets something too far back on her tongue, but she's even learning how to maneuver things around so that she doesn't gag! I'm just so proud of my little girl! Just two months ago, I was afraid we were stuck with this button as a permanent part of Vaeh, but now the light at the end of the tunnel is getting brighter!
On another note, our little heart friend Elaina has stabilized somewhat & is starting once again to improve. They are planning to try to place a broviac line today so that they are able to monitor blood work & give meds. Please keep praying for this strong little girl & her family. She has been through so much & still has quite a road to travel until she's able to go home!

Wednesday, July 2, 2008

More prayers needed...

This post is to ask once again, for prayer for a little heart friend of ours, Elaina. She is a precious little girl with a heart defect very similar to Vaeh's. She is just nearly 6 months old, & has been through so much. She just had open heart surgery #1 on June 12th & then underwent an emergency open heart (#2) on June 18th. Her little chest was open for 10 days! She has been on a ventilator since June 11th & had been making some nice improvements until Monday.

She has taken a turn for the worst, now on full ventilator support. They aren't sure where things will take her from here. Right now the only thing Hollie (Elaina's Mommy) can do is rely on support from her "heart friends", & most importantly PRAY! All of these heart kids have so many praying for them, & as heart families we know that prayer really does work! So PLEASE say an extra prayer, or two, or one hundred! There can never be enough prayer for anyone, & I know without it Nevaeh wouldn't be where she is today! Please remember Hollie, Elaina & their family in your prayers. If you'd like to leave them a message of support, just link over to their blog here, or click on Elaina's name on the right hand side of Vaeh's blog under "heart friends."

Thank you for all of your support of our family through Vaeh's journey! And thank you for praying for Elaina - she's part of our "heart family."