Milestones

When it comes to kids, there are so many milestones. There are the 'typical' ones that all parents look forward to: the first smile, sitting up, pulling up to stand, walking, amongst others. Each one is such an exciting experience in the life of a child. Both for the child & for the parents! Its something I always worried I would miss with Gabie. Some I did, but a lot of them I was blessed to be able to see! Her first steps, just before her first birthday, we were actually able to catch on video... I still tear up a bit when I see it ;0)

The night Nevaeh was born, I was running all of the 'typical' milestones through my mind. I can't wait to see her roll over, stand up, walk. Unfortunately when she was about 12 hours old, those milestones took a back seat to a new set: upcoming surgeries, procedures, medications & doctors visits. Once a child, a family in fact, embarks on their journey in this crazy world of CHD's, things take a much different path. Our journey included changing Vaeh's feeding tube & learning how to feed her with it, monitoring her oxygen & giving her O2 via a cannula, and MANY medications. Those medications began within the first day of Nevaeh's life. At one point she was on as many as 14 different medications every 2 hours beginning at 6 AM and ending at midnight. I would have syringes lined up at the sink for each of her different medicines and dosages, and a list taped to the cupboard so that other family members that came to help could keep track.

One by one, we were able to take away a syringe when the doctors decided to discontinue one of her medications. As time passed, the line up of those syringes became smaller. Its been a couple of years ago now that we were able to stop her lasix. That left her revatio (aka: viagra) which she was on for her Pulmonary Arterial Hypertension. Of course, she also has her nebulizer treatments that we still have to do prn (as needed), but the revatio is the only regular, oral medication she has been on since her lasix was stopped.

She started this medication almost exactly two years ago, to the day (toward the end of February 2009). When she started taking it, we had quite a time getting the approval for it as it is quite an expensive drug. Then once we got the approval, we found out that for the first six months, the pharmacy had been dispensing an incorrect dosage - half of what she was supposed to be getting! That was not a fun experience to go through, but we were finally able to get her on the correct dosage. It was about six months ago that we began to lower that dosage since her PA pressures had begun to come down. The hope was that if we could get her pressures to come down & stay down, without the medicine we could stop it.

Back in November, we again lowered her dosage for the second time to 2mL's ( half of the beginning dose). On February 14th, we again saw Vaeh's cardiologist for a follow up. Again, her pressures had maintained at a low enough level that Dr. Butto said to lower her to 1mL for two weeks, & then... are you ready for it?!



STOP HER MEDICATION!!!!!! Yep, that's right! We are going to stop Vaeh's very LAST medication. I am sitting here in the living room, waiting for 11 PM to roll around so that I can give this...

for the LAST time!!

This last dose of her medication begins a "first" for Nevaeh... this will be the very first time in her life, other than the first 12 hours of her life, that little Miss V has not been required to take any medication!!! I am going to be able to go to bed at 8 PM if I want & not have to stay up so that I have to wake her up to give her some nasty tasting medicine... WOO HOOOO!!

She is scheduled to go back to see Dr. Butto again on March 14th for a follow up visit/echo to check her pressures without the medication. Then we'll probably head for a trip to the cath lab to get a true measurement of her pressures off the medicine. Beyond that, I'm not sure what life is going to hold for our CHD warrior!

I am so looking forward to this next stage of life for Vaeh. Of course, we will always have to watch her, always have to see Dr. Butto, always be on the look out for anything abnormal. That is the life of a CHD child. Maybe we will be able to go longer than 3 months between visits. Maybe six months or, dare I say it? A year?! We'll just have to wait to see what this next chapter holds for us!

Nerves

Usually I don't get too nervous when it comes to Vaeh's appointments. I don't really remember being any bit nervous with her last appointment back in November. Its just become such a routine thing, if you can imagine that in this world of CHD.
But the past couple of days, those pesky nerves have been creeping their way back into my head. Vaeh's got a cardiology appointment coming up... during the last appointment he said that we would be heading to the cath lab probably in the spring.... are her pressures going to be better this time, too? Will they have gotten worse & he'll want to go to the cath lab sooner? Will he want to wean her off the drugs completely this time, or in another step? There's always such questions that crop up with these appointments. I know that every heart parent goes through these emotions/questions with any doctor appointment that comes along, even if their child has been doing absolutely wonderful!
I was sitting in the dining room with my Mom tonight discussing my nerves as the girls sat at the table cutting paper. One of Vaeh's favorite things to do is to cut paper... its her "homework" she tells me! I told my Mom how its so easy for me to slip into that "everything is fine" mode. Vaeh looks the picture of health these days. She plays with her sister & other kids, she goes to preschool four days a week. She lives each day of her life to the fullest... all the while being a child who lives with a CHD.
Its hard not to let my mind wander back to the days when I worried every day if she would survive. I used to check her in her crib several times a night to make sure she was still breathing. (Occasionally I still peak in on her just to be sure...) Here lately I even worry about her complaining of her leg hurting. Is it growing pains? Is it something vascular? Since we have a fairly significant family history with blood clots, & she's had some difficulty with that, that one crops up pretty regularly. When we do go back to the cath lab, will it be just a routine cath or is he going to come out & say that she needs another OHS soon? I really hate this.
I know that her appointment is going to go well! I have to believe that, or otherwise I think I would drive myself crazy. I know we're going to breeze through this one because she's doing so well! I just like to 'vent' my crazy feeling from time to time... so thanks for letting the blow whole let loose! LoL
Praying everyone is doing well! Remember to promote awareness this CHD Awareness week & always!

Junkies

So, my hope for going through the winter unscathed by illness was dashed last weekend. Miss Vaeh had been coughing a bit, but nothing out of the ordinary. Considering there are 4 to 7 other kiddos here on any given day & she attends pre-school 4 days a week, she's been exposed to everything under the sun.

After a hefty coughing spell she ended up vomiting. Then the fever arrived... ugh. So last Sunday we took Miss V to urgent care for a chest x-ray to make sure it wasn't our 'friend' pneumonia. Thankfully, he has remained on vacation! (I hope he does permanently!) The doctor who was working in urgent care that day had actually worked out at UCLA in pediatric cardiology for a while, so he knew exactly what was going on with Vaeh's heart, so he was very understanding of my concern. After having the x-ray & a swab to rule out influenza, we had scripts in hand & were on our way home with a diagnosis of "asthmatic bronchitis."

Because of this round of "sickies" as they are known in our house, our buddy made a re-appearance:

Its been at least a year since we've had to use our friend, but thankfully Miss Vaeh hasn't forgotten him! She still holds it right up to her nose, after of course helping to put the meds into the cup & turn it on! After a week of neb treatments & an antibiotic, Vaeh sounds much better. She's still coughing a bit, but is almost back to 100%.

School was a "no go" for this week for Vaeh & Gabie was home one day & able to sleep in 2 other days due to ice/snow. Now starts the make up schedule for the kids. Vaeh won't have any make up days, but if anymore days are missed they will have to be made up at the end of the year. So, we'll see how far into June the kids actually go...

With CHD Awareness Day/Week coming up, a couple of other heart mom's that live here in our town & I are trying to get something in our local papers. There are 2 that we're trying for & today I am supposed to do an interview with one I'll try to put up a link to the articles if I can! How are all of you going to 'celebrate' CHD day?! Vaeh & I are planning a great day, including a trip to the cardiologist! What a great day to see her heart doctor, huh?! I'm hoping that our plan continues: weaning the revatio & then a trip to the cath lab. I'm guessing that sometime at the end of May, beginning of June is when we are heading in there. I'm hoping that we are able to get things scheduled around both dance recitals this year! The girls put so much work into dance that I don't want either of them to miss out on their special day!

Hope everyone is doing well! Thanks for checking in on us!

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!

Geesh

Yep, its official. I am a MAJOR slacker! I know, I know... there's no excuse, sorry :0). I guess I've just been in a funk when it comes to blogging. Its the only explanation I can offer. I have been checking in on all of you, I promise! I just haven't been in a commenting mood. There's been some 'behind the scenes' stuff going on here (that I won't bore you all with) & I'm trying not to focus on that! On to the good stuff! When it comes to the girls, everything has been wonderful!

We've actually had a fairly busy summer. We got to spend quite a few afternoons in the swimming pool! Gabie loved swimming last summer, but Miss Vaeh really didn't get much of a chance as she would turn blue rather quickly. This summer she tolerated the water so much better... and it turns out, she's quite a fish! My in-laws have an above ground pool, so we used it quite a bit. Gabie is now tall enough to touch on her 'tippy-toes' so she was all about "swimming on her own!" Miss Vaeh wanted in the water just as much as her big sister. So with a floaty suit (has a built in flotation in it) & arm floaties, she went for broke! She was all over the pool & even falling off of rafts that were floating. Getting her head wet - all the way under! I am such a proud Momma!

Vaeh did go back to see Dr. Butto at the end of June & had a spectacular appointment! She has grown a whole inch & gained 2lbs in 4 months! So funny to see such a weight gain when it wasn't that long ago that we were worried she wouldn't gain any! She's quite a tall, muscular girl! Her echo was great! It showed that her pressures were down from (@last visit in Feb.) 55-60 to 45-50. So, based on those numbers dropping... we're weaning her OFF the revatio!! I was absolutely floored! I had really prepared myself that she was going to be on that for quite some time. Not the first time my Momma gut failed me - keep reading;0)

We asked about putting her in dance & if there were any restrictions we should let the dance instructor know about. I have to admit that my brain still hasn't really comprehended what he said, but "tell them to treat her like a normal kid with a normal heart!" I was almost knocked off my rocker, so to speak. I think it really caught me off guard because a huge theme with kids with CHD's is that they have such restrictions, & for her cardiologist to use the term "normal" with regard to my daughter... lets just say I never thought he would use those two in the same sentence! He has told us in the past (right after she was born prior to her first OHS) that she will have restrictions when she is older, but for now "normal" is what we're taking!

This appointment Daddy was able to go since he was on vacation. Right before we left, he asked Dr. Butto if we were looking at a heart cath any time in the near future (my Momma gut had been telling me that a cath may be coming soon). The good doctor told us, basically "if its not broke, don't fix it"! Again, the 'Momma gut' was wrong... much to my delight! So, nothing big is in site for Miss Vaeh for quite some time! We do have to go back to see him in November to see how her pressures are doing with the lowered dose of revatio & hopefully we can drop it again! I don't know what I'll do if we get to the point of NO meds... I'll be lost! LoL :0)


Now fast forward to the first week of September... BOTH my girls are in school! Miss Gabie started first grade in a brand new building this year, & Miss Vaeh is back at her pre-school, actually in a classroom spot. So instead of going only one day a week, she goes 4 days a week & sees her PT one day! So I actually get regular time alone... all to myself! I'm not sure what to do with myself yet:0)


They also both started dance this week! Gabie is so glad to be back in lessons & I think would perform a recital tomorrow if I'd let her:0) Miss Vaeh is in love with dance! She loved her first class & is such a performer! I think Miss Renee (their teacher) is going to have her hands full!

So there's the "catch up" post! I know it was kinda all over the place, & WAY over due. I am going to force myself to get out of this funk & make an attempt at posting on a more regular basis! Please don't hold it against me if I don't, though;0) I promise to try to post some photos of all this craziness that's been keeping me distracted from my blogging. Thanks for checking back... praying all of you are doing well! I promise more to come... soon:0)

Beautiful Dancer!

Kids grow up way too fast. That reality hit me smack dab in the nose this weekend. Even thought Gabie has been in kindergarten, & even Vaeh in pre-school one day a week, it hadn't really sunk in. There's something about seeing your daughter in make up that changes your perception...

This is Miss Gabie in the holding room before her recital began this weekend. Isn't she just adorable?! (Notice the TWO teeth missing! She pulled the second one last Saturday... again, all by herself! Yet another sign she's growing up WAY too fast!)Now just so you know, she will NOT be wearing make up on a regular basis for a very long time! This was just for the performance:0)

I asked her if she was nervous on the way up to the recital, & she said "No. I'm just going to do what you told me: do what Miss Renee said!" She was only in one number for this, her first year. But to watch her on stage, you would have thought she'd been dancing for at least a couple of years! The smile was there, she sang along with the song & did her steps perfectly!! (Yes, I am just a bit biased;0)) Here she is on stage...

Isn't she beautiful?! (Again, just a bit biased!)

It was so much fun watching Gabie blossom into a little dancer this year! Now the fun begins, because you know who'll be joining her in taking lessons next year, right?!



On another note... Congratulations to Dan, Megan & Elijah on the arrival of Samson! Welcome to the wonderful world of a family of 4!

Vaeh's IEP

We had Miss Vaeh's IEP this morning, & it went well! Someone will be going to preschool 4 days a week next year, & getting some time with the PT once a week! Oh, & she'll be riding a school bus!! Guess that means I'm gonna have to cut the cord & let Gabie ride one, too:0/

They said that basically she is caught up, but is still needing some "fine tuning" on a few things, like jumping, hopping & balance. So those will be some of the things they work on next year. She'll start back up in September & go through June of 2011... wow, that's just not right! 2011?!?! Geesh, where does time go?!

As for Miss V now... well, we've been dealing with a fever, upset tummy & being sleepy. The sleepy part is affecting both of us:0/ Hopefully its just her 4 year molars coming in & nothing more. Her gums are looking quite white as if they are trying to come in, so hopefully that's all it is!

Oh, & we got some great news this morning... the little guy that I've been babysitting for became a big brother this morning!!! Congrats Josh, Abbey & Noah on the arrival of Adalynn Elaine! She's beautiful... can't wait to meet her!

Hope everyone has a great weekend!

Wow.

Where to begin? I know that this is the longest I've gone without posting since I began this blog. Time seems to have gotten away from me. Life has taken over... in a good, "normal" way!

The latest has been getting ready for Gabie's dance recital coming up the first weekend in June. She's so excited! Dance classes started back in the fall, just as she was starting school. The dance season is coming to an end & its prep time for recital. So we took photos of her & my cousin Leslie (who is in her 10th year of dance... congrats, Leslie!), & Miss V last week so we could put them in the program. Here's the three girls together. We just had to include Vaeh in the photos... she wanted to be a ballarina, too!


Aren't they adorable?! I can't wait to see my little ballerina on stage! We're already planning for next year... two in dance class:0)

Miss Gabie also had another big day... her first Daddy-Daughter Dance! Her school PTO put the event on. They had all sorts of little things for the girls to do like getting their finger nails painted, having "tattoos" put on, & all sorts of little trinkets. They also had a spot to have their photo taken, too! Then it was on to the dance floor! Gabie & Daddy danced to "Butterfly Kisses". Made me tear up - 'sniff, sniff'! She had a wonderful time, & Daddy did as well. She even had a pretty little corsage for the night...



It pays to know people in the florist buisness ;0) ;0)!

Then another big first happened for Miss Gabie... she lost her first tooth! I couldn't believe it. I went to pick her up that day from school, & here she came with a little baggie. "Mom, Mom, I pulled my tooth today!" WHAT?!?! Boy she's not my kid... I was the one that let them go until they hung on by a thread. Not Miss Gabie, she pulled it right out herself after lunch at school that day. So they gave her a cute little treasure chest to bring it home in. And of course, that night the "Mole-i-nator" showed up (aka the Tooth Fairy). She's called "him" that since she watched The Santa Clause 2. My, she's growing up way too fast! See the big hole the tooth left...

Her permanent tooth is making its entrance, & in the process has helped the next tooth over loosen a bit! She can't wait for that one to come out, too!

As for Miss Vaeh... she's having fun being a normal happy, healthy 3 year old! She really enjoys going to school on Monday, as well as seeing "Miss Barb" for therapy. Her school year is coming to an end (along with Gabie's) & so we have her IEP this Friday. From what her therapist tells me, there's a good possibility that she'll get a 'spot' in a classroom setting next year. Which means that both my girls will be in school! Vaeh would go Monday thru Thursday for about 2 and a half hours each day, plus therapy time in addition! I can't believe how fast time has flown! It seems just like yesterday we were freting over her upcoming surgery to complete the repair, & now its been 2 years (May 15th) that she's been fixed! Simply amazing that 2 years ago, this is what my baby girl looked like...



And just look at her now!


(*PS - Jen - that card she is holding is the Valentine y'all sent her! She loved it & carried it around for nearly a month! Gabie had been getting birthday cards in the mail, so it really made her day that SHE got mail!)

Overall we're doing really well. Things are tight, but who doesn't have that problem these days?! I'm trying to add another kiddo to my babysitting list, other than the one that will be arriving this Friday to her Momma & Daddy! (Congrats Josh, Abbey & Noah... we can't wait to meet her!) Just trying to live life to the fullest! This is the first summer that we won't have to worry about going outside to play... Miss Vaeh is doing quite a good job of keeping up with her big sister!

Redonkulous

"Redonkulous." That's the only way I can describe my lack of blogging lately. Can you tell that the girls have been watching "Bolt" lately? Vaeh's been going around saying "that's redonkulous" here lately, & if you've every seen "Bolt" you will recognize that from the pigeons! She's becoming such a chatter box here lately, taking after her big sister!

Things have been pretty status quo here lately, as far as the girls go. Vaeh has a bit of a cough & runny nose, but that's par for the course, & will probably hang around until the weather improves a bit. We've once again brought out our trusty friend the nebulizer to keep things in check. I'm keeping a really close eye on her though, RSV seems to be rearing its ugly head again:0/

Things were quite busy here at the beginning of March as well. My Aunt's Mother-in-law had been very ill, spending a lot of time between different hospitals & eventually in a local nursing home as they were unable to accurately diagnose her. They finally decided to bring her home in early February as things weren't looking very promising. The first week of March, she passed away so we were busy helping their family out.

Now that the weather is getting nicer (at least it had been getting nicer... we're back into cooler, wetter days here for now) we've been getting out & about more. Vaeh loves being able to go outside & play with her older sister! I'm going to be spending a lot of time out doors this summer!

I've been wanting to post some photos, but for some reason I haven't been able to. Either blogger or my computer haven't let me... that, or they're conspiring against me! (LoL) I gave it another shot today, but with an older photo. Here is Miss Vaeh back in February of 2007, while she was still in the hospital recovering after her first open heart. You can see she still had her NG tube at that point. She was a few weeks shy of turning 5 months old in this photo. (Sorry about the quality, its off of our phone.) Even back then, she was a spitfire! Here she is making faces at Mawmaw during one of our many visits!

She was about 3 and a half weeks from coming home in this picture. Boy were those crazy days. I wondered more often than not back in those days what our outcome would be. Looking at her now, I know that we're blessed indeed!

Hope you are all doing well! I should get going... we're watching "Hannah Montana" again for about the 500th time! (LoL)