Frustration... again:0(

Okay, so I know I've again become a blogging slacker. Guess having anywhere from one to 4 extra kids in the house everyday takes up so much more of my time! (and my mind;0) Things have been going fairly well here. That is until the phone call I received this past Friday afternoon at 5:15PM. When I looked at the caller ID, my heart kinda sank. I knew it probably wouldn't be a good conversation once I picked up the line. Despite that sinking feeling in my tummy, I went ahead & answered the phone... "Tina, this is Maresa at Dr. Butto's office. We were wondering if it would be okay to push Nevaeh's heart cath back until May 26th." "Are you kidding me?!" This was my exact response to her question. Of course she answered yes. "We've had an emergency case come in & Dr. Butto was wondering if we could re-schedule Nevaeh's" I'm pretty sure she could sense the frustration & disbelief in my voice as I explained that Jon had alreay scheduled off work. I had already re-arranged things for my schedule, as well as Gabie's. She seemed kind of taken aback as she told me that she would check with Dr. Butto about keeping her on the schedule. She told me she would call me back. I'm currently waiting on that return phone call... grrr! I don't think that hospitals or doctor's office staff truly understand how frustrating it is to have to reschedule things. I really do understand that there are emergencies... Vaeh has been bumped twice when on the schedule for open heart surgeries. But this one really perturbed me. Seriously, you wait to call a family of a child having a cardiac catheterization in the coming week on Friday afternoon, basically after business hours? If its such an emergency, then why can it wait a week & why isn't the first procedure of the day being bumped instead of us? Not to mention, we have to come from 90 miles south of your facility for this procedure... not just a 20 minute drive across town. So, I'm hoping that Monday morning brings news that won't totally disappoint me or stress me out for another month waiting on this to be done. You would think there would be some better organization, here. Sorry for the quick vent, but this is the life of a CHD momma! Hope everyone else is doing well! I'll post all the fun details when I get them:0/

We are scheduled...

I feel so out of practice. Vaeh's cardiologist's office called yesterday when I wasn't at home, so I called back to schedule today. I had been praying that we would be able to do this cath at the hospital Dr. Butto is based at, but I found out today that it has to be at another hospital, across town, which we have had some trouble with how they've treated Vaeh in the past.
She is scheduled for noon on Thursday, April 21st. We're not sure yet when she will have to go in for her pre-op testing, possibly the Wednesday before. But knowing that she is the afternoon case, I'm hoping that we will be able to do it the same day... but I'm not holding my breath:0/
I've had a flood of emotions already with this one & its only been scheduled for a few hours. I think knowing that he may balloon her pulmonary arteries has me a bit more on edge... its always such a difficult process for him to get access to her PA's (thanks to that lovely octopus in her chest that's comprised of her PA's). The last time she had ballooning, it was a marathon 4 hour cath... ugh.
It does work out that Gabie will be out of school those days for spring break, so that at least takes one thing off the "to do" list. I just don't like having to explain this to my 4 year old... she's getting to big & understands now. Let the fun begin :0/

Upcoming...

So we returned for Vaeh's follow up visit with Dr. Butto yesterday. She was first on the list, so we buzzed right in & right through, until we had to wait for Meghan ;0) She's one of the gals that does the echos & she is fabulous w/ Vaeh:0) The echo went well, with Vaeh actually cooperating quite well through the entire thing (usually she starts to get a bit squirmy toward the end) Believe it or not, the little stinker actually grew about 1/16th of an inch & gained a half a pound in 4 weeks... wow! At this rate, she's gonna be 7 foot tall! Okay, maybe not quite that tall but she can slow down a bit in the growth dept! She's even been asking about when her teeth will begin to fall out... ya know, since Sissy is loosing her teeth;0)
Dr. Butto came it to look at her echo & said that "in effect" nothing has changed! Her pressures have remained the same even without the revatio. He had actually expected them to spike a bit, he told me later. Everything looked great! I then had to ask the looming question... are we looking at a heart cath? I think that Dr. Butto wasn't feeling the greatest, because he gave me a somewhat blank stare. Then he told me we would go back to the clinic in Lima in 2 months, & we'll do another heart cath between now & then. So, sometime next month we'll be heading into old familiar territory.
Its been 2 years since Vaeh has had to have anything done, so this is gonna be a strange experience. Although since this is number 7... we'll probably slip back into it like riding a bike - unfortunately :0/ I'm really dreading having to explain things to her this time, since she is old enough to understand so much more than the last time she had to have anything done. I am praying that it is able to be done at our favorite hospital... I know it will be a much better experience there:0)
For now, we just enjoy life without meds. No more syringes sitting by the sink, ready to give her meds (for the first time in over 4 years, I have my counter top back:0)). And we wait to see when this next round is scheduled for...

Winter Fun!

Isn't she just adorable?! Okay, okay. So I'm a very biased opinion here - LoL! This photo is from a couple of weeks ago when the kids had a snow day on a Friday. This was followed by another unexpected day off on Monday due to flooding. We had gotten about 7 inches of snow on Thursday night/Friday morning, which was followed by a spring-like warm up with a couple of inches of rain. All of the melting snow followed by 2.5 inches of rain = lots of water! This is what we had to deal with on Friday (which the kids thoroughly enjoyed, I might add!)...

And this is what we had to deal with on the following Monday...

This was taken at our high school's football practice field. You can see the 'sleds' they use for tackle practice halfway under water. Thankfully we live far enough away from the river that we weren't affected. My in-laws were a bit closer to the action...

Their house is just on the other side of that large evergreen tree on the right side of the photo. Quite the change over the course of a couple days, huh?! Gotta love Ohio weather... okay, well you don't have to love it, just deal with it if you live here!

So this particular Friday, we were actually able to get outside & enjoy some snow time & the girls were able to build their first...

snow-bear?
She started out as a snowman, but this snow was so wet & dense, that the moment you picked it up it hardened! We had to mold this lovely instead of rolling her, so we added a few touches here & there... bam! Our first "snow-bear"! The girls both had a great day & enjoyed themselves playing outside. Especially since it was the first time they'd been out all winter:0)

Since that day of fun in the white stuff, we've had, ah-hem, a "nice" couple of days bonding with the couch. Vaeh started off early Thursday morning, around 1:50am, throwing up. She was up all night repeating the same. Gabie got up around 3 & didn't fall back asleep until around 4:30am. I was debating keeping her home from school, when she made the decision for me. She followed her sister's game plan & started throwing up around 6:30. So, thus began my day of consoling my girls while they were not feeling so hot. Gabie ended up with a long weekend, missing school both Thursday & Friday. They both did pretty well on Saturday, until early Sunday morning when Gabie decided she wanted just a bit more attention;0) She had me up around 2 on Sunday, but was pretty good the rest of the day. So Monday morning rolls around & I figured we're finally back on track... WRONG! Vaeh decided to get sick one last time when she got out of bed... UGH!!! Guess she figured she needed a couple more days at home with Momma!
She finally headed back to school this morning & was ecstatic! As an added bonus to her return to school, her teacher also returned! Mrs. Raymond had been out a couple of weeks after she took a fall outside of the school one day when it was icy... & subsequently broke her nose! She's finally back on the mend & was in class today:0)

So next Monday marks our two week anniversary with NO MEDS! Vaeh has been doing quite well. There really haven't been any major changes with dropping the meds. I do find myself looking rather closely at things... does she look a bit dusky? Are her lips/nail beds purple? It stinks, because it really has me second guessing everything that she's been doing lately. Then tonight at supper, my Mom remembered to tell me that last night she & Vaeh were running to catch up to Gabie (Mom took the girls to Gabie's roller skating party for school since it was MY turn bonding with the couch:0/) & Vaeh told her the "I can't breathe." Wha...??? She said she recovered very quickly, & really didn't seem phased by it at all. She's been fine since. So now its a moment of "do I call the cardio or just wait since she's scheduled to see him in 5 days?"

After thinking about it, we'll probably just wait until Monday for her appointment since she's been doing fine other than that one, isolated incident. I'm praying that her appointment goes well & if we schedule a cath, that it will be soon!

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)