With all the hubub about Christmas last week & me not having my head on straight (thanks, vicodin!), I forgot about Vaeh's upcoming test. We had already rescheduled her cardiology visit as well as the CT scan for the week of Jan. 12th. She see's her pc on Monday that week, then on Wednesday we have to go to Toledo Children's for her CT scan. Going to be quite a busy week. Oh, but wait... it gets better!
Her latest heart cath was to follow her CT scan. The thing about the heart cath is that it has to be done at another hospital in Toledo, due to sedation/anesthesia issues. I'm not really happy with having to go to this other hospital because its one that 1.) we're not used to (even though she's had 2 caths there, & 2.) we've had some issues with the care she's received there with her past caths. Radiology tech's being rude & treating Vaeh, my Mom & me with such disrespect & disregard for Vaeh as a patient. (Let's just say don't get me started on this tangent!)
But the week of Jan. 12th just got a little busier. Dr. Butto's (her pc's) office called last Wednesday & they've scheduled her heart cath for Jan 15th, which would be Thursday that week. So, we'll be in Lima on Monday, Toledo on Wednesday, & Toledo again (down town - ugh! what a great neighborhood - NOT!) Thursday!
Now comes the fun part... figuring out the logistics. Do I take Vaeh to Toledo on Wednesday & just spend the night there, or do we come home, & make the drive again the next day. I believe her cath is scheduled for noon, so we wouldn't have to leave at the crack of dawn. The other thing I have to take into consideration is Gabby. She's been pushed to the side for Vaeh's tests so much & Wednesday is a school day for her, so I have to decide whether to keep her out of school & take her with me, or find someone willing to keep her on Wednesday & cart her to/from school.
And all of this while fighting hot flashes - UGH!!! Will we ever get away from Vaeh having tests so frequently?! Oh well, just another day in paradise, right?! (lol) What a way to start 2009 off!
Saturday, December 27, 2008
With all the hubub about Christmas last week & me not having my head on straight (thanks, vicodin!), I forgot about Vaeh's upcoming test. We had already rescheduled her cardiology visit as well as the CT scan for the week of Jan. 12th. She see's her pc on Monday that week, then on Wednesday we have to go to Toledo Children's for her CT scan. Going to be quite a busy week. Oh, but wait... it gets better!
Thursday, December 25, 2008
Saturday, December 20, 2008
Thank you so much to all of my blogging family for your thoughts & prayers! Jon & I got home about 2 PM this afternoon. I'm doing fairly well. Quite sore, but so glad to be home!
Scott, my doc/surgeon, said that my pelvis was very narrow at the base, so it was no wonder that I was having such problems. Everything went according to plan & now all I have to do is heal. So now the fun really begins.
I'll be resting quite a bit, so don't know how much blogging I'll get done, but thanks again for checking in on us! Everyone else is doing well!
Not really a whole lot to tell you, the girls are doing wonderful, and Tina called me about 9:15, and said the doc had already been in and said she can leave at anytime!! I am feeding Miss V her Kelloggs Special K and getting everything done so that I can go get Tina and bring her home!! She's dying to get on here and check on everyone, so I'm sure she will be on here later today!! Thanks again for all your prayers! Jon
Thursday, December 18, 2008
Hey everyone! Sorry to keep you hanging on, it's 10:55 pm here, and I finally got a chance to give you and update on Tina. Let's start from the beginning, we got to the hospital about 10 am, they got her into preop pretty quick, then we had to wait. This was hard for me because I hate to see Tina stress, and she was ready to get the show on the road and get it over with, and there was nothing I could do. They did finally tell us that her doc was running behind due to a c section first thing in the morning that started his day off wrong and put him behind. This made me feel better because thay don't normally tell you anything or give you any idea on when. She was scheduled for 1 pm, about 2, here comes doc, he apologized for running late, and off she went. About 4:15 doc came out and said she gave him a little trouble, but nothing out of the normal, this kind of concerned me but he explained and everything was fine. He said we could see her in about an hour once she was back in her room, this had to be the longest hour ever, but we finally, got to see her. Her mom and I stayed with her for about an hour, then we left, this killed me because I wanted to stay with her, but I had to get home to the girls, a friend of ours came in and stayed with them until about 5:30, then my wonderful baby sister and her kids came over until I got home. I want to thank all of you for your prayers, and I will try to give you an update tomorrow sometime! Jon
Tuesday, December 16, 2008
Just a couple of thoughts tonight:0) Boy did that sound profound or 'corney'? (lol) Vaeh is getting better, although this cough is just hanging on:0( It sounds so horrible, but yet otherwise she's fine. Her sats have been great (at a half liter) since Sunday evening, & is running around the house like an 'almost-normal' 2 year old. I did call her cardiologist's office & decided to reschedule her CT scan. Its now the second week in January (14th). Between her funny sounding lungs & this icky weather we're having, I didn't want to drive an hour and a half north into this stuff!
Speaking of the weather... if its going to be this cold the least it could do is SNOW! I don't mind winter when there's snow on the ground. I get to snuggle up in my blanket with my girls! But this icey stuff we're getting is for the birds! (Thanks for sending it my way Amber & Krista - lol)We have a winter weather advisory out until morning & they're talking about another system behind it. As long as its snow & there's a white Christmas I can put up with it:0)
The other thing is my nerves. I only have one more day & then its my turn to go to the hospital - ugh! Im ready to get this thing over with & not have the pain, BUT I'm scared to death about the surgery itself. There's this spirit of fear that seems to be enveloping me... So if you all wouldn't mind, please say a little prayer that things go well!
Hope everyone is warm & healthy!
Monday, December 15, 2008
What a silly group!
Gabby hard at work!
Are you sure this is how you're supposed to do it?
This is how you should be doing it!
All the kids had such a good time icing the cookies last week! With everything going on around here, its taken me a couple of days to get some of the evience posted on here! Vaeh was just as "normal" as could be - licking the icing off the knife. So, we gave her her own knife (yes - I was right next to her the whole time:0)) & she had a blast!
I had such a good time doing this with the girls. It really felt 'normal' for a change & because of that I didn't care how big a mess they made:0) My cousins were over & always have a good time with the girls. The boys were having too much fun, though. They had icing all over their hands & faces! Take a look at these two!
What a couple of crazy kids!
"Joshy, the red-nosed 3rd grader!"
And just so you know, I DID send those boys home all sugared up! I'm sure that their Momma is ready to repay the favor to me!
Sunday, December 14, 2008
So, early this morning we decided to take Vaeh in to the ER to be checked. Her cough just hadn't gotten any better, & she was really starting to rattle when you'd listen to her breathe. Something told my 'Mommy intuition' that I should check her sats & sure enough, she was down to low 90's, even dropping to 88%! Definitely not her norm.
So up to Lima Mawmaw, Mommy & Vaeh went. Of course they tried to start an IV (even though she hadn't been vomiting & she'd been eating good) & couldn't get a line. So they finally decided to just go with a blood draw & chest x-ray. Thankfully the blood work came back okay. Her chest x-ray was okay, but the doc said he couldn't compare it because their system was down (darn computers!). From what he described to me, it sounded better. So, after hearing that I had seen her most previous film, he brought this morning's in for me to look at. I don't think I've ever seen such a good film on Vaeh:0) He was quite comfortable with us bringing her home, knowing that I was pretty on the ball with her - FINALLY a doctor who doesn't think that Mom's are stupid! (I need to go back & clone this guy, huh?!!)
So we got back home around 8 AM. Vaeh & I both slept 'til about noon & she acts fine. She is on 2 ltrs. O2 now, but I"m going to try to wean her as I can. I'm also gonna call her card's office on Monday to see if we need to re-schedule her CT scan. She always has trouble after having anesthesia with her lungs if they're not so good to begin with! So we'll see where we go from here.
Hope everyone else is doing well. I promise I'll post those pics I've been promising - later:0)
Friday, December 12, 2008
Vaeh is still doing pretty well, although she developed a nasty cough with a runny nose. Still no fever. But I decided to fill her antibiotic anyway & start her breathing treatments back up. The combination seems to be helping! I just don't want her going into this CT scan (next week) & the upcoming cath with any cold symptoms at all! Last time, she ended up in the PICU for 5 days following her cath because of pneumonia. We've had our fill of that already & its not even winter yet!
We're going to frost some of the Christmas cookies that we baked this afternoon. We're going to pick up "the cousins" after school & come back & have a frosting party! I'll have two 11 year olds, an 8 year old, a 4 & a 2 year old all with frosting. Yes, I AM crazy:0)
I'll try & post some pictures & a video if I can later!
**On a side note, please keep Miss Gracie in your prayers. They had to take her to the hospital the other day & she's slowly getting better. In another note, there's a new family making their way into the blogging circle that have just found out that their baby has TOF. Please keep Baby David & his family in your prayers, too!
Saturday, December 6, 2008
Thank goodness for prayers & for quick in & out visits with the doctor. He basically said that she has a cold, especially since she's not running a fever. The nebulizer isn't necessary for now, & neither is an antibiotic. He did ,however, give me a script for a CXR & an antibiotic if she starts showing signs of needing it! So that made me a little more comfortable about things! Thanks for keeping her in your prayers - they helped:0)!
(Original post follows...)
You know, there are just some days where I feel like Vaeh can't catch a break. Today is one of those days. She got up in the middle of the night last night & Jon stayed up with her. When I got up this morning, she was lethargic & sounded very congested. Out comes the stethoscope. She sounds a little coarse/wheezy on the left side this time, so we're heading in to have her checked.
I was a little bummed that her pedi wasn't on call, because the one who is of course wants to see her & do some blood work. Can't just take Mom's word for it, cause I could be right & actually know my own child better than he does! This doc has a tendency to "educate" with a long explanation as to why he wants to do things. No thanks, I'll just take the meat of the story & get on with it!
So if you all would, send up an extra prayer for Vaeh that she won't need to be admitted & we'll only need oral antibiotics! Hopefully everyone else is doing well & enjoying the weekend! I'll update when we know more!
Tuesday, December 2, 2008
This is no fun. I had myself somewhat prepared for going "under the knife" this week, & that dreaded phone call came early this evening. "We need to reschedule your surgery." My OB/GYN had a death in the family & needed to reschedule.
Can I just say "been there, done that!" We went through this with Vaeh & having 2 of her surgeries rescheduled. NOT FAIR!! I understand completely for my doc & his family's sake, but I'm really bummed. Plus this means that I have to endure this discomfort for 2 more weeks! My new surgery date is now December 18th. Yep, I'll have a very lazy Christmas this year. Oh well, for some reason I wasn't supposed to have surgery this week. NUTS!!
Although, this does give me more time to get things organized a little more for Christmas!!
Okay, so I've been following MckMama's blog for quite a while now. I love how she posts about real life & real situations/ solutions. This give-a-way was just too good for me not to post about! They're having a raffle-a-way for a camera package with some wonderful extras! If you click on the button at the top of this post, or on the right sidebar of the blog, it will link you over to MckMama's blog. The proceeds are going to a wonderful cause(s).
In other news, Vaeh is doing wonderful! No ill effects from her bout with pneumonia, other than these nasty lumps in her thighs from all the shots! Thanks, Amber for the advice - it helped immensely! She's still walking somewhat stiff-legged, but is now trying to bend her knees some!
Other than that, all is fairly normal. The tree & decorations are up (I'll post pictures later) as are the outside lights. And this morning there was quite a blanket of the white stuff outside! Now, I just have to get past the nerves about this Thursday. I have to be a the hospital by 9AM, & surgery is scheduled for around 11:45. We'll see what time they actually get me back there! So, if you all would, send up an extra prayer for me on Thursday?!! I'd really appreciate it! Hope everyone else is doing well!
Thursday, November 27, 2008
As everyone else is, today we are thankful. There is so much to be thankful for in our lives. First, we have a loving, merciful, faithful God! If I had nothing else, that would be sufficient. On top of this, I have a wonderful & loving husband, and two beautiful daughters!
This morning, as we were getting ready to go to our traditional family gathering, I found myself watching Vaeh - in wonder and amazement. She has come from death's doorstep, & now is an eating, breathing, walking miracle! She is a testament to God every second she is here! Its so hard to look at her little mouth stuffed full of goodies, & remember that just a few short months ago she didn't eat anything by mouth at all!
We have a wonderful family (both here & in blogger-land!) that we are blessed to have in our lives. We are so thankful for each & every one of you! This journey is that much easier because of all of you! So, to all our friends & family, we want you to know that we are so thanful for each of you! Have a wonderful Thanksgiving!
PS - On a side note... Congratulations to Andy, Krista & Seth Layman! Krista announced on her blog today that their family is growing!
Saturday, November 22, 2008
Saturday, November 15, 2008
Friday, November 14, 2008
Yes, I know that its like 40 days until Christmas but I couldn't help myself! I just love this time of year & I couldn't wait any longer to change the background. Or for that matter, to put up a new playlist! These are just some of the yearly Christmas songs that I love (btw - the "Blue Christmas" is one that Jon loves! He searches for it every year!)
I hope you all enjoy the change in music... I promise I'll change it back after the Christmas season passes. I just don't think that the Christmas season lasts long enough! Hope everyone has a wonderful holiday season!
Wednesday, November 12, 2008
Vaeh is really starting to feel better I think. She even wanted a sucker while waiting at the pedi's office. Her appetite has started to pick back up & she's drinking like a fish again. Today was her last round of this nasty stuff...
She's been getting two shots in each leg every day since Monday. On Sunday, it was two shots TWICE! Her poor little legs look like pin cushions! At least they did mix the drug with lidocaine which I think helped! As of this evening we don't have to have any more shots! When we saw Dr. McNeal today, she switched her to omnicef. Thank heaven!
As I mentioned in my last post, she saw Dr. Butto (her card) on Monday & he said that she'd be having a CTA (CT of the arteries in her chest) followed by her cath/angio. Well, the nurse from his main office called on Tuesday & said they had scheduled her CTA for Dec 9th. Well, I don't think I'll be quite up to an hour & a half drive just 5 days after my surgery, so she rescheduled that for Dec. 17th. Then while we were at the pedi's office today, Jon said they called again. This time was to say they had her cath scheduled for Dec. 8th! What?!?! If I can't make the CTA, I don't think a cath is going to make a difference. Besides the fact that she has to have the CTA before the cath. So, the nurse apologized & said that they would have to schedule the cath for sometime in January. What a crazy winter we're going to have. (We have a wedding in the family in January, too!)
So, Vaeh is close to being back to the normal "Miss V." Hopefully the CTA & cath/angio will go off without a hitch. We didn't discuss the button on Monday, but based on her weight today at the pedi's it shouldn't be an issue - she was 26.6 lbs!! That's my girl! Hope everyone else is well!
Monday, November 10, 2008
Seems like I've posted this before! (lol) Miss V is doing much better, thanks to all of the prayers going up I'm sure! At least this time we were pretty close to home, like Jon mentioned. Sorry about the comments not being there on his post, for some reason we have to go in & check allow comments & he must not have known!
Well, she did have another pneumonia. This time it was the right lower lobe. This one was really tricky to find. She didn't have any wheezing/ rhales when listening with a stethoscope & her sats were perfect (100%)! They even did a straight cath to check for a UTI which was negative. It wasn't until the chest x-ray that my thoughts from her initial visit with the pedi were confirmed. I think I'm going to ask them for a standing CXR order!
Her white cell count did come back at 47,000 on Saturday, but as of this morning's blood draw it was down to 19,500! I felt soooo bad for my little precious:0( They stuck her twice & couldn't get a line in, so they decided to give her the rocephin IM, meaning a shot every 12 hours to give her the meds. And of course due to "hospital policy" they had to give her TWO injections each time they dosed her!!! That became an issue for me! The first dose was given in one injection without problem & then they decided to change it! WHAT?!?! I asked the nurse if the reason was simply to charge for two vs. one injection! (I worked at this hospital for 8 years, so I know how there "policies" go!)
So, after having home injections set up until Wednesday when she sees the pedi again, we went over for her appointment with Dr. Butto (her cardiologist). He said she looked great, especially for having a pneumonia! We're going for a CTA (CT scan of the arteries in her chest) & cath/ angio most likely in December (depending on my post op recovery & the doc's schedule!) He said it wouldn't be in November because of scheduling & he wanted to give her a rest to heal up from this bout! He didn't seem too convinced that she would come off the O2 after the cath? So, if you would all keep Vaeh in your prayers a little extra until after the cath, that she is able to come off that nasty stuff! That's what we're praying for!
So, we go back in for a follow up this Wednesday & hopefully can switch to an oral antibiotic! Maybe we'll have a hospital free holiday for Vaeh?! Thanks for checking in on us! I'll let you all know the dates for the cath, etc., when I get them!
Saturday, November 8, 2008
Hey everybody, Jon here, just wanted to give you an update on little miss V. After Tina's last post, Vaeh spiked a fever again, so she called the doc and they said to bring her into the clinic. She went in, they ran some tests, ruled out uti, blood work came back not good. Her white bloodcell count was, I think 47,000 so guess what! Yep, they admitted her, Tina is at the hospital with her, I just got into town about 9:30 pm from New Jersey on my way to Milwaukee, WI., so I figured I would let everyone know since Tina can't. They did some more tests today and the pnuemonia is back. I think Tina said upper right lobe, so she will be in the hospital for a few days, at least she is in Lima, (30 min. away) and not back in Toledo(1 1/2 hrs away)! Tina said Miss V is resting ok tonight, and we will see how things go! Please keep them both in your prayers, and Tina will post more later.
Well, I think she's finally on her way to getting better. Last night was the first night since Tuesday night that she would sleep in her bed! Which means that Momma got to sleep in HER bed - woohoo! I've never appreciated a mattress more (lol)!
She's still not near her normal, but this morning when she woke up her temp only read 97.3 on the thermometer! Up until this morning I couldn't get her below 100! I tried tylenol with a cool bath & that didn't even bring her temp down. So, the best Mawmaw in the world picked us up some motrin & tylenol (I was getting low, imagine that - ha!) & we did the motrin. After a bath she really perked up for about a half hour then wanted to rock-a-bye. By 11 PM I had them both in bed!
So, that's the update on little Miss V! Hope everyone else is staying healthy! We'll have to see what our date with Dr. Butto (Vaeh's card.) brings on Monday! Hopefully some good news about saying goodbye to an unwanted friend, or 2!
Thursday, November 6, 2008
while I was posting this, she was running 104.0 & that's axillary!! So because I haven't been able to get her temp down consistently I put her on a pedialyte pump to get some fluids in her, hoping that her temp will break?! Otherwise we may be headed in... nope. I'm not going to 'say' it.
So, send up an extra prayer for little Miss V today... I want my happy 'non-tube fed' girl back!!
Saturday, November 1, 2008
It sounds crazy to think, & I personally didn't think we'd ever see it again. The price of gas is BELOW $2 per gallon! It dropped there earlier this week in Lima (about 20 minutes north of here) & the day before yesterday dropped to $1.97 here in town! Its just sooo funny remembering how 'awful' it was when it neared $2 per gallon originally, & now we're glad to see it back down to that! Isn't our economy amazing?! (lol)
On another note, my surgery is scheduled for December 4th. I'll have to be admitted post op for 2 to 3 days, & then I'll be able to come home! I'm having mixed emotions about it - want it to be done tomorrow & in the same turn scared to death! Ha - if my emotions are mixed now I don't want to think about how they'll be after the surgery (lol)!
Also, Vaeh is scheduled to go for her bi-monthly date with Dr. Butto next Monday! I'm hoping that he'll see our aggravation with the oxygen tubing & we'll go for a cath & be able to ditch it soon! Keep praying... !
Hope everyone is having a good weekend! BTW - HAPPY ANNIVERSARY to my Hubby! They've been 6 wonderful years (tomorrow) & I can't wait for many, many more to come! I LOVE YOU!!
Friday, October 31, 2008
Its just not right... it shouldn't be the end of October! Oh well, guess we'll just have to roll with it! It was the yearly trick or treat night here last night, so of course we had to get the girls all dressed up...
Aren't they just the most adorable little ballerina's in the world?! Thanks again, Kathy, for the cutest tutus & leotards!
One of the local churches here in town had a "trunk or treat" night, so I took Gabby over to that. The members of the church park their cars in a circle around the parking lot & open the trunk (or hatch, etc.) to pass candy out from. They had the fire dept. there with lights so everyone could see. Gabby had the best time!
While we were out begging for candy, Miss Vaeh stayed back at our house with Mawmaw & helped to pass out candy. Mawmaw said she had fun looking at all the costumes & seeing the kids. I guess she even really went crazy happy when a little girl came up with a Dora hat on - she's really into Dora right now!
Hope there weren't too many ghouls & gobblins bothering everyone this season!
Tuesday, October 28, 2008
Is it pink enough for you?!
We painted both the girls rooms over the past couple of weeks (to see Gabby's click here to go to her blog to see pictures!) & the girls had a ball! The lettering in the last picture is an applique that I ordered. Its a new thing I found called Uppercase Living. Basically its like a sticker that you put up on the wall. If you decide you don't want it anymore, you just peel it off. You can put it on walls, canvas, glass, etc. There are so many things you can do with it! I had the girls' names custom made for their walls & they turned out great!
Vaeh is doing really well in her own room (& so is Mommy;0)). She hasn't had any difficulty sleeping. Most likely because of all the hospital stays - she can sleep anywhere! The snotty nose is all but gone! She really didn't have a hard time with it, thankfully!
I'm going in on Friday to schedule my surgery. I'll have to be in the hospital for 2 to 3 days, then have lifting restrictions for 4 to 6 weeks - UGH! Oh well, the pain will be gone!
Saturday, October 25, 2008
Okay, I know that germs can't be passed through the internet, but I've been wondering here lately?! Seems like all of our little heart friends are catching bugs, & now its Vaeh's turn:0)
She's had a stuffy nose lately, but not really running or any drainage. We kept her home from the halloween parade on Thursday night because it was quite chilly & didn't want her to catch a cold. Well, to no avail! She got me up this mornning around 4 AM with a plugged up nose! She wasn't too happy about me trying to clean her nose out, but she did tolerate her breathing treatment well. She was so used to that thing before that since we haven't needed to use it I think she's forgotten her former best friend (lol)! She didn't seem to mind it though, while sitting on my lap.
So we had a xopenex/pulmicort party this morning & as of 9 AM, she was still fast asleep! So, anyone else who wants to join our party... stay away(lol)! We don't want to pass this along to anyone! Praying that everyone else remains healthy &/or gets back on track soon!
Tuesday, October 21, 2008
I think I have professional bowlers in my house! The girls were having a great time playing the Wii last night. Gabby does pretty good playing by herself, but of course little Miss V wants to be included. So, Mawmaw found a toy remote (that's actually a tin with gum in it) that looks like a real one, so we pretend that she is playing too! I wasn't able to get her almost running on video, but thought that her playing the Wii was pretty cute!
Thanks for all the well wishes for me! I'm getting back to normal, but not quite 100%, but I'm getting there. Hope everyone else is doing well!
Saturday, October 18, 2008
I'm here! Sorry I didn't update last night , but I just wasn't up to sitting at the computer last night. I'm more sore today than I was when I got home yesterday afternoon, but all in all I'm not feeling too bad. And as for the drugs, well... let's just say percocet & I don't get along! (lol) So Tylenol is my friend for right now:0)
Of course, the doc was running behind yesterday, so it was actually 2:30 PM before I was taken back. After what seemed like an eternity, I woke up in recovery. It was then that I realized that it had only been about 45 minutes since I was taken in! It was a great nap, though! Jon said that Scott (my doc) came out & talked to him about 5 minutes after 3 PM. Jon said that the doc told him that I have a "very angry uterus." He found that I have fibroids & that's what's been causing the pain. (Funny how that didn't show up on the ultrasound!)
So, the next course of action is most likely I'll have a hysterectomy at some point. Okay, I'd been begging him to just do that in the first place! But at least now the insurance will cover it because there is just cause! So, that's the scoop on Momma! The girls are both doing just great! Vaeh is almost running! The biggest problem now is that someone in the house is going to break something by tripping on her oxygen tubing! (lol) So, we'll be having a discussion with the cardiologist about when her angio will take place to get her off the O2.
Thanks so much for all your prayers! I really appreciate them & know that they help immensely!
Thursday, October 16, 2008
Okay, so I'd say about 97% of the blogs I follow are about kids that have heart conditions, & the others are because of health related conditions. So usually posts referring to surgery are about our kids. Well my friends, not this time. Yep, its Momma's turn tomorrow. I'm going in for an outpatient laparoscopy.
I've been having pain in the left lower abdomen off & on since shortly after Vaeh was born, & in the past year it has gotten considerably worse. A couple of weeks ago I had a trip to the ER for right sided pain, which was unrelated & quite coincidental! After trying the most recent treatment that didn't work at all, my doctor thought that we should do the lap procedure to actually see what's going on in there & figure out the problem. From what I understand from the surgeon, if they find anything they will go ahead & take care of it while I'm there.
So, tomorrow at 12:45 its MY turn in the OR. I have to be there at 11:45 for the pre-op stuff (IV,etc.). I'm extremely nervous about it - afraid is a better way of describing what I'm feeling. I've been having bad thoughts about not coming home, etc., but we won't re-live those:0)! I know that everything will be fine & I'll be home & in 'la-la' land tomorrow evening (hopefully they give me some really good drugs!).
So, I would greatly appreciate your prayers tomorrow & I'll update as soon as I'm coherent enough! (lol)
And while we're sending prayers up, please keep Gracie in your prayers today. She's had some fluid collecting around her heart & it has worsened quite rapidly. She is on her way to the hospital tonight (Thursday) for a procedure to drain the fluid tomorrow because it is increasing. Please keep her, her family & the doctors/ nurses in your prayers!
I'll be chatting with you soon...
Friday, October 10, 2008
So, once again in blogger land, I've been tagged by another heart momma for two different tags! They seem kinda fun, so I'm going to pass it along! Hollie got me with this one.
Tag #1: A photo tag. You're supposed to pick your 4th file, then pick the 4th photo. So here goes...
I cannot believe that this was my Gabby girl about 4 years ago! Wasn't she absolutely adorable?! And you all thought Vaeh had a head of hair!! She'd had several hair cuts by the time this picture was taken (at least 2!)
Tag #2 : Again, Hollie got me with this one! What a busy woman she is!
Now for the 7 random/weird facts about me! (okay, everything about me is weird! - lol) 1.) I've lived in the same small town in Ohio all but 11 months of my life. Yes, boring I know!
2.) I was a licensed physical therapist assistant for 10 years before Vaeh was born. I still hold my license, but not sure about renewing it...
3.) I dyed my hair red for about 7 years - any shade of red you can imagine, I was probably it at one time (even matched Ronald McDonald for a while!)
4.) Jon & I had our first date, became engaged & were married inside of 7 months!
5.) I played the saxophone (alto & tenor) for 8 years in the school band (from 5th grade through high school)
6.) I've "broken" my upper palate - I wore a palate expander for 3 months to widen my upper jaw. Terribly uncomfortable & makes you talk funny!
7.) I share my birthday with my two younger cousins, sister-in-law, Sylvester Stallone & Pres. G. W. Bush!
Now, its my turn to 'share the wealth'! Here are the people I'm tagging: Carley, Vanessa, Megan, Amber, Karen, Krista & Ana. Hope everyone has fun learning more about each other & maybe yourself in the process!
Thursday, October 9, 2008
Just a quick note to ask everyone to keep a couple of our heart friends & their families in your prayers. First off, our little friend Gracie had her heart cath on Wednesday, & is having some not so fun times:0( They have finally figured out why she was having some difficulties after her procedure (thanks to her wonderful Momma!)& hopefully she is on the way back to being her happy little self.
The other friend is Kaitlyn. She had another open heart a couple of weeks back & was doing great, just turning one last weekend! Early this week, her Mommy noticed a red spot on her incision which earned her another stay at the lovely hospital. Latest report is the blood cultures came back negative & she should be going home soon!
Please keep these two cutie pies, & all our other little heart friends inyour prayers. I'm sure they appreciate them as much as we do - prayer changes things!
Wednesday, October 8, 2008
Aren't they beautiful?! Yep, its an older picture, but I just love this one! I've really been thinking a lot this week. It all started when I was watching Extreme Makeover: Home Edition this past Sunday. I've always loved that show & the fact that they do something incredible for families who deserve it. This week, the family was from outside of Cincinnati. A family of 5, with 4 of them having a life threatening condition. I mean, its hard enough with one child who has "special needs," but to have all of you children & your spouse?! I can't begin to imagine.
The three children were precious; two girls & an older brother. Big brother, like his Dad, has Chrone's disease. I'm not sure of all the particulars, but I know that it can be very painful. The two younger girls both had spinal muscular atrophy. Again, not sure of all the particulars, but they were both confined to wheelchairs.
I know that when I watch the show, I need to have a box of tissues close, & this week was no different. Such a greatful family with a great outlook on life. I guess when I have my down days (which are few & far between, & not one in sight for a while, I hope!) I just need to think about where we could be. All I can do is thank God for bringing us this far!
I promise I'm not down in the dumps, but just wanted to let everyone know we're all okay & very blessed! Thanks to all our family & friends (this includes all of my "heart family," too!) We love you guys!!
Thursday, October 2, 2008
That is, until yesterday. I know that I posted about Miss V's first steps. But this time its about actual walking! She's finally got it down pat, to the point that she's walking all over the place. It all started yesterday morning out in the kitchen. I was cleaning up from breakfast, & I just happened to catch her walking between Gabby's little table & one of the chairs at the big table. Little stinker thought she would get by without me seeing. So we took to the living room & I made her do it again. This time she stands up all by herself without holding onto anything! She's been holding out on us! The next thing I know she's walking out from my bedroom all the way to the living room (about 35 ft.)! All this with the O2 tubing wrapped around her little feet! She should have great balance when she's older (lol)!
The therapists came today (PT & OT) & they were quite suprised to see how much she was doing in such a short time! This was from tonight, with the girls wearing the most adorable tutus & leotards from Kathy, Isaac's momma. She has an online store where you can get these adorable outfits & so many more. You can visit her online store by clicking here or on the 'heart 4 hearts' link on the right hand side of the blog. She was so kind to send an outfit, including a tutu, leotard & barrett, for both of the girls! Thanks Kathy, they really love them! Here's some more pictures of the girls in their tutus tonight!
My little ballerina!
Like this, sissy!
Thanks for our tutus & leotards, Kathy!
Thanks for checking in on us!
Wednesday, September 24, 2008
**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!
Tuesday, September 23, 2008
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
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!
Look at me now!!
Wednesday, September 17, 2008
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
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
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!