Wednesday, September 24, 2008

On the go!

**Make sure you pause the music first! You can hear her say "bye-bye" as she's shopping! Oh, & notice that she has the purse (lol)!

This is the first thing she did the other morning, even before I had a chance to change her. She headed straight for her shopping cart! It was something that we picked up with some of her birthday money at Walmart & thought that it could help with her walking. Well, as you can see by the video, it is helping! If it weren't for the silly O2 tubing she'd probably take off, but we're stuck with that until her heart pressures come into check. (Maybe after her next cath we can get rid of it!) Here's a couple more pictures from last night that I just couldn't resist. Gabby got a Sharpay dress up set that included a wig. I don't think that Vaeh would make a very good blonde!

I know I'm beautiful, do you?

Look at my long golden locks!

Uh, Mom, you're in my way!

Tuesday, September 23, 2008

Angel Colin...

It is with a sad, heavy heart that I write this post. Our little heart friend Colin passed away on Sunday, September 21, 2008 at his home. He was such a precious little guy & will be greatly missed. Please keep Melanie, Tim & Colin's family in your prayers during this difficult time.

Friday, September 19, 2008


With Nevaeh turning 2 this week, it opened up the memory banks to right after she was born. How tiny & fragile she was. It wasn't fair. The prospect of what she would have to go through to correct this 'problem' we now faced. Having a medical background wasn't a comforting thing in the beginning. But as we proceeded through the journey, it became an asset.

Looking back at how angry I was in the beginning, I now see that it was an answer to prayer. Albeit, not the answer that I wanted, but an answer non the less. I had prayed so many times to be a 'stay at home mommy' and now I was. I just never imagined that this was the road that I would take to get there.

I am so thankful for both of my girls & every moment that we have with them. Each breath they take is a blessing & a gift from the almighty creator Himself! Thank you all for sharing in this journey with us!

Just three days old in the NICU in Toledo.

Finally at home after the first open heart!

Look at me now!!

Wednesday, September 17, 2008

Happy Birthday, Miss Vaeh!

We made it! Today is Vaeh's 2nd birthday. Its so hard to believe that she is 2 already! Especially when there were sooo many days in the beginning that we were afraid that we would loose her! She is such a strong little girl... a fighter! She has been through so much, that no child should have to go through, & we are so proud of our little girl!

We had her birthday party on Saturday (yes after my trip to the ER & yes, I was on GREAT drugs!) & she had such a great time! She got several cute outfits & some toys. But the best part was seeing her dive into her little cake! It was like we were re-living her 1st birthday! She needed a little help getting started, but once Daddy showed her how, she went for it! It was soooo fun to see her with cake smeared all over her face, & then to see her fliping cake everywhere! She was too cute! Here's a montage of her at her party!

What an cutie pie she is!! Sorry, guess I'm just a biased Momma!

On a side note, thanks for all of your well wishes about my ER trip! Yes, I'm feeling better now although still a little tender. And yes, the drugs were GREAT & did help. Thanks for checking in on us!

Saturday, September 13, 2008

Trip to the ER...

Yep, we had another trip to the ER yesterday. Don't worry, this time it wasn't either of the girls, but it was Momma's turn! I've been having some issues with abdominal pain for quite some time (female related, lets just say...) but yesterday morning it changed. I had just changed Vaeh's diaper & had this wave of sharp, stabbing, dull, achey, crampy pain all at the same time.

So after a phone call to the family doc, I was headed into the ER. Of course, they wanted to rule out appendicitis. So after the normal history & physical with 3 different people, it was decided that I needed a CT of the abdomen with contrast. The routine blood work was done & an IV started. When you have a CT with contrast of the abdomen, they give you 2 different types of contrast: through the IV, & now they do it "through the other end." They used to have you drink it, but have found they get better pictures with this new way.

At first things moved pretty quickly, & I was given some pretty nice drugs for the pain & nausea (for future reference, dilaudid is great!). By early afternoon they had run the CT scan & blood work, but now came the fun part... waiting for the docs to read the scan. So finally about an hour & a half later, they came in & said I have mesentaric adenitis. Basically I have swollen lymph nodes in my abdomen that mimic appendicitis. And because its caused by a virus, there's nothing I can take to make it go away! Great! So instead I now have vicodin. And all of this is happening when I've planned Vaeh's birthday party for TODAY! So, needless to say its been a fun couple of days here. I'm feeling pretty good this morning, so off I go to bake goodies for the party... Hope everyone has a good weekend!

Tuesday, September 9, 2008

WOO - HOO!!!

I don't think I've ever been THIS excited! I need to remember to ask Dr. Bove the next time we see him what exactly he did/ put in Vaeh with this last open heart! I swear that he flipped a switch or put the last piece of the puzzle in! I'm really not sure, but whatever it was I wish he'd done it with the first.

Do I have all of you in suspense yet?!?! You all know from reading about little Miss V how much progress she's made just since her "final repair" was done in May. Her speech has taken off - with her vocabulary being well over 30 words. This includes "uv-oo" (aka - love you!)! And of course everyone knows about how much of a little piggy she's become - & I couldn't be prouder! But up until tonight, there was one thing that I've been holding out for. At first I thought she might be able to accomplish this feat before her 2nd birthday (which is next Wednesday!). But here lately I'd kind of given up on pushing this issue.

But tonight, she finally did it. It wasn't pretty & it was quite brief, but none the less, she did it. VAEH TOOK HER FIRST STEPS!!!!!!!!!! (can you tell I'm a little excited?!?! - lol!) Hence, the title of this post. Here's a video of her actual first 6 steps without holding onto anything or anyone. She has come so far & I'm so proud of my 'reflection of heaven'!

***Make sure you scroll down & pause the music player! Sorry in advance about my 'squeel' at the end, but I was just so darn'd excited!

I just can't believe that everything that I thought we would never get to experience with Vaeh is finally happening! What a lesson in patience! It truly is a virtue!!

On a side note, our little friend Kaitlyn is doing great! She was able to remain off the vent & is now trach free! This after having to be taken back to the OR to remove her central line! Please keep them in your prayers as they are hoping to make it home this week, which happens to be in Ft. Worth. Hopefully 'Ike' won't give them too much hassel!

Monday, September 8, 2008


Yes, I do realize that it isn't November yet, but that is when little Miss V has to return to see Dr Butto for her next visit! The appointment went very well today & Dr. Butto seemed pleased with how she's doing. Of course we had the traditional EKG & ECHO. She sat ever so still for her EKG, which has never happened IN HER LIFE!! I was so amazed at what a grown up little girl she's becoming! Her ECHO went well, too. She was a very good girl, staying as still as an almost 2 year old (yes - next Wednesday she will be 2!) can stay. Then Dr. Butto came in & it was all over. She did fairly well, although she & doc had a mild disagreement about what the ultrasound gel is for. She likes to smear it all over her chest & pushes the transducer out of the way while they're trying to get pictures! Too funny!

Speaking of grown up, she now weighs 26.3 lbs & is a whopping 33 3/4 inches long! She grew a half an inch since July. Her weight was down a little from her appointment 2 months ago, but doc wasn't concerned with it. Especially since she has an ensatiable appetite & her activity level has at least doubled since then. He was also quite suprised at her not being tube fed! I just love it when she does something that they don't expect her to do!

Now for the technical info for all you heart mommas out there. She has to remain on the oxygen at this point as her pressures still aren't just right. Her sats have been great (100) ever since we got home in May. We've been told since her surgery that she will probably need to be on the O2 until they place a stent due to the stenosis in the right pulmonary artery, not for saturation problems. So for now, we have a trail following behind Miss V all over the house. Makes finding her sooo easy! Thanks to her normal squirmy-ness during the ECHO, doc again wasn't able to get a great look at her PA's. So at this point the plan is to have a CTA (CT scan of her chest - arteries) probably in November after her next visit & then a visit to the cath lab with at least a ballooning of the right PA, if not a stent. So we're at least another 2 months before anything major has to be done/ thought about... how cool is that?!

I can't get this crazy thing on my head!

Our best friend, at least for the next couple of months!

Darn, she caught me!

Sunday, September 7, 2008


As I've read that everyone else has been on this band wagon, why should we not join the party! Daddy came home on Friday night with the whole sinus package (stuffy nose, cough, sore throat) & by Saturday morning both the girls had it. Amazingly enough I've faired pretty well despite the feeling of a sore throat tonight.

Vaeh hadn't needed an aerosol treatment for almost 2 months until this weekend. With the track record she has, I thought it better to error on the side of caution. So far they seem to be helping! The true test is her 2 month cardiology visit Monday morning. Its the first visit with him since Vaeh hasn't needed her G-tube! Wish us luck!!

Other than the sniffles, we experienced a loss in the family this week. Jon's Grandmother (paternal) passed away Friday morning. She had been in poor health for quite some time, having been diagnosed with Lou Gherrig's back in the 80's. At the time of her diagnosis, the doctors gave her a short time to live (less than 10 years I believe). Well, being it is 2008, once again doctors don't know everything. Unfortunately we were never able to take Vaeh over to meet her as she was residing in a nursing home (just too great a risk for her health). Needless to say, it wasn't the best weekend for Jon.

On a good note, our little heart friend Kaitlyn is doing wonderful after her recent open heart. She had been on a vent/trach at home, however when they decided to extubate her, they tried with not putting the trach back in & so far... she is trach free!! Please keep her & her family in your prayers! Thanks for checking in on us. I'll update after Vaeh's cardiology appointment tomorrow!

PS - Like the 'signature'? Just click on it & it will link you over so that you can create your own!

Thursday, September 4, 2008

Bumps, bruises & babies!

I know, pretty strange range of topics in the title. But that's what we've seen in the last few days. Miss Vaeh is getting sooo good at this getting around thing. She is still doing her "Mowgli" crawl & looking absolutely adorable while doing it. But with this getting around thing we are entering new territory. For everything that Miss V has been through in her nearly 2 years, we up to this point hadn't had any "normal" bumps, etc. That is until last night! Check out these pictures & I think you'll get the idea...

Like my goose egg, with purple accents?!

The weapon!

No, I don't beat on my child!!She was trying to stand up while sitting by my leg, & instead of going up she just kept going forward. Poor baby, she has this purple mark dead center of her forhead! Luckily we don't have any pictures planned (lol)!

That covers the bumps & bruises. Now for the babies! No, we're not going to have anymore little bundles join our immediate family. However, one of my high school classmates has an adorable little girl that I started babysitting for today. Her name is Mylie & she's 8 months old. She, too, has a CHD (VSD & ASD) in addition to being 3 months premature. She's one tough, cute little cookie & the girls had an absolute ball with her here today. Vaeh was so funny. Mylie also has to wear O2 right now as her VSD is still open (her ASD was closed a couple of months ago). When Vaeh got up this morning & saw Mylie she said "My-e, noos" & was pointing to Mylie's cannula! How cute she was! Little Miss Gabby was 'the babysitter' today as well!

Look, Gabby, she has one just like me!!

The girls really enjoyed having someone new around. It was nice to have a baby around, too! Takes care of the itch I've been having from another one!

Tuesday, September 2, 2008

Having fun!

We've had some pretty fun stuff going on around here. As you saw in my last post, we painted the living room last week - what fun for Momma & Daddy (lol)! The girls really enjoyed having Daddy home & getting in some time with him. I know as much as we miss him being here, he misses being here with us. Hopefully soon he'll be able to find something more conducive to being home more frequently!

To top off our 'vacation', we headed over to Grandma & Grandpa Lively's to go swimming! Gabby has really taken to the water, but this was the real first opportunity to get Vaeh in the water. She LOVED it! We had a little floaty seat for her & she just layed back & hung out in the water like that was where she belonged. We all had a really good time. It was nice to do things as an entire family, outside of the hospital!!

Let's go over there, Mom-mom!

Is it safe?

I'm ready to go diving!

Sissy, why you flyin' through the air?!

So, the other big thing that happened this weekend is that - drumroll, please - Miss V crawled!! It wasn't the prettiest thing in the world, but she was up on all 4's moving across the floor. And, Daddy was here to see it! She looked very similar to Mowgli in "The Jungle Book" when he marches with the elephants (hands & feet on the floor with her bum up in the air). It was absolutely precious. I have Gabby's first steps on video, & Vaeh's first crawling experience on video!

PS - Please keep our little heart friend Kaitlyn in your prayers. She had another open heart procedure today.

Also, I started a blog for Miss Gabby - "Mommy, do you have a blog for me?" How can any mommy resist a question like that?! So if you get a moment, just click on her picture in the right hand column & it will link you to Gabby's blog! Hope everyone has a great week!