Another update

Sorry I haven't wrote in a while, but there wasn't a whole lot to write until today. We're still waiting on Ava's lung to heal. It's about there though, only 3 m.l. of fluid came out today. They're going to take the chest tube out in the morning. YAY!! Yesterday Ava was fighting the vent so bad. For about 2 hours straight she was gagging and coughing, to the point where her little face was turning blue. I had the doctor called over there to see about taking the vent out and she agreed with me. If they didn't she was going to pull it out anyway. Well about 10:30 last night I get a call from the doctor (which by the way is a moron and got wrote up this am... I'll get to that in a min.) he wanted to "introduce himself since we've never met" then FINALLY gets to the point... and tells me they had to reintubate Ava. AKA putting the vent/breathing tube back in her. She was working hard to breathe and her co2 level was high. OK about the moron thing. Ava isn't supposed to have fetenol. She had a reaction after her first surgery called chest wall rigidity. Well the lovely Dr. decided to give it to her twice last night. Not a smart move. Luckily nothing happened. Something very very bad could have happened, then something really really bad would have happened to Mr doctor!!! So anyway after being up half the night, not being able to sleep filled with worry, I went there early this am. Ava looked great though. Her day primary nurse was there, cleaned her up, and she was all nice and pretty. She looked better than she has in a long time. Her nurse also wrote the Dr. up. I guess he's only there until the end of Oct. anyway. Ava's going to get dilated Thursday. They are doing a swallow study tomorrow to make sure there are no leaks...but.... today on the x-ray they saw a bulge in her esophagus. They will look at it again in the morning to make sure its not a leak of some sort. If it is that means more surgery. Hopefully not... poor baby has had to many already. Not to mention the scars... I can't help but think what she's going to be thinking about all of them when she's older. Also today the cardiologist came by to take a look at her heart. The four little holes were still there but once again they don't think that they will cause her any problems. He did find a leak in the tri-cuspid valve. (I think that's what it's called... i wrote it down somewhere)This could mean more surgery but hopefully not until she's older. He said it's a tricky surgery and they would deff put it off as long as possible. There is a chance that she will kind of grow into it and it won't cause her any problems. They are going to keep an eye on it every month to six months for the first year. If it's not giving her any issues then we'll go to once a year. It's prob caused from her vsd repair. (heart surgery) They had to go in by that valve and that's what damaged it. So for now... that's all I got. I'll let everyone know how Thursdays dilation goes and maybe have a few pictures. Oh and I got to go shopping this weekend. For the kids of course. Still no boots for me :( I still don't have it all out of me and prob never will. I dream about shopping... I LOVE it!!!! I didn't get Dawson much (they didn't have much) but I did get Aryssa and Ava some of the cutest clothes EVER! I want to go back to Gap and buy Aryssa these super cute brown boots. Christa ended up getting them for Lakin and she wore them today. I told her to take a picture, they are seriously the cutest brown kid boots I've ever seen!!! Ava got a super cute Christmas outfit with a matching bow-headband from gymboree.(of course emma has a matching one) I wanted to get Aryssa and Dawsons Christmas outfits from there too but Eric for some crazy reason thinks 20.00 is too much to spend on a kids skirt and kids shirt. Not sure where he's from in the shopping world, but wal-mart and craigs list isn't where I'll be getting the kids clothes. The shopping this is too cute to pass up part of me wanted to buy them anyway but the oh crap he's not working sane part of me figured I better not. The skirt matched Ava's outfit perfectly and would have looked so cute with a creme shirt and creme tights with some black shiny mary janes. And the boys outfit, sooo cute. It was super super cute pants with a cute pladdish shirt with a vest. Christa was going to get the same for Gavin... but we would have been fighting over the vest because they only had one of the size we needed :)It sounds kind of dorky but you would have had to see it.. it was all at gymboree, so it was cute! Oh and did I mention Christa has a van? He-he sorry Christa, had too. Funny story about that that involves me telling random people she drives a van :) Anyway no pictures today, but I'll add some here in a couple days!!! P.S. does everyone hate this cold cold weather as much as I do? I wander if your van gets around good in the snow Christa?

My babys

I'm just sitting here at the hospital watching my baby sleep. I wish Dawson could be here watching her sleep with me. He's starting to have some seperation issues, poor little guy. He cried so hard when I left yesterday. (I've been gone over a week)He was trying his hardest not to, and his little eyes just welled up with tears as soon as I hugged him. Broke my heart. I tried explaining to him whats going on but in his little head he's prob thinking this baby comes along I was already worried about "my mommy loving her more than me" (yes he said that, but then again when you're an only child what kid doesnt think that when a new baby comes along? )and now she's spending all this time up at the hospital. Not to mention the few other times I had to be away from him because of my pregnancy. I just feel so bad for him. He doesnt know any better. I think people think that he's 15 or 16 instead of 8. For some reason hes got in his head that Ava's number one, which is not true she's not number 1, him, Aryssa, and Ava are all number one in my book!!! He doesn't take that as she's sick and that's where mommy needs to be he takes that as mommy loves Ava more than me. He's 8, he's selfish, kids are supposed to be selfish. They want their mommys and daddys all to themselves. Heck I still want my mom all to myself sometimes. When I'm hurting or in the hospital or upset who do I call or want by my side? My mom. Well and Eric, but we're on the mommy subject right now:) Ok and you too Christa. oooook grandma too :) I think even at 16 if she was to be gone with my brother or sister I'd be upset too, I can't imagine if I was 8. As I'm holding him on the chair yesterday and hugging him, Eric decides to give a sippy cup to Aryssa and give it to him. I had to play it off like it was funny so it wouldnt hurt his feelings. He's already upset I don't think calling him a baby is going to help much. I know Eric was just kidding, but sometimes I don't think men think about that kind of stuff or realize how it can hurt a kids feelings. And besides that he is still my BABY! I mean I'm not going to have that much cuddle time left, he's growing up, and soon won't even want me kissing him. Ahhhhh that scares me I don't want to see that day. Oh well he's just going to have to deal with it. If he gives me stuff about it I'll start kissing him in front of all his friends at school and holding his hand to cross that street when he's 16 :) Oh goodness that's only in 8 years. And he's already 8... look how quick that went! Poor Aryssa, she's been away from her daddy all week too. She started bawling when we left. When she starts crying she has a really hard time stopping. She's so cute when she crys though, it makes you want to pinch her so she'll cry some more, hehe j-k! But she does (yes I know you're not supposed to start a sentence with but) this sniffle thing and she cant stop, you just have to see it, its CUTE! She's like the cutest cryer of all time! Poor Diane, she had to deal with two crying kids after we left, I bet she's glad to be home! Bless her heart, she stayed with them all week, over a week actually. I wouldnt have been able to do that and they're mine, hehe. I hope they were good for you!!!! I really don't know what we would have done without her this week. Her being there gave me and Eric both a chance to spend time with our little angel. All she's done is sleep, but when they're on the vent and of course have heart surgery, you never know what's going to go on. We both def felt better being able to be this close to her. Thanks so much again Diane, I hope sometime we can do something for you that means as much to you as what this did to us!!! Soooo Ava's still on the vent. If she doesn't get better over the weekend they're going to send her back over to the nicu. I guess they're better with handling babys that are on the vent for a legnth of time. Works for me! I feel better when she's over there anyway. It's going to suck because I can't spend the night with her... but I'll know she's in good hands when I leave. At least we can be there during the day and at home with Dawson and Aryssa in the evenings. I think that will be good for everyone!!! Espically the kids. I just wish wish wish we could bring Ava home with us. There really hasn't been any changes. She did (which I got a video of ) wiggle a little bit, opened her eyes to stare at me (gosh I missed that!) and watched her mobile today without de sating. Ok litterally as I said that her heart rate just dropped to high 50's. They gave her some sedation and suctioned her and she was good. Must've had some boogers in her throat!!! Plus she's on her belly and she DOES NOT like to be on her belly. Anyway earlier today, she just stared at me. Well it was a drug induced slanty eyed stare. Her heart rate, oxygen, nothing went crazy. Normally as soon as she starts stirring they have to sedate her because she de-sats. Not today. I think that's a GREAT sign. She's not in pain like she was for one, plus she's breathing over the machine when she's awake, and that's good. She has to do that in order for them to take her off. It's prob (once again something different) going to be next week before she gets off the vent. We'll see how this weekend goes I guess. OK well, some little brown boy keeps trying to come in this room, so I'm going to get the nurse, then post this video. Sorry no new pictures, except one. It's of the ambulance Ava got to ride in. Her first big girl car ride ;) Everyone have a good weekend!!!

My babys almost two months old...

all the crazy stuff in her room

Dawson got to see his baby sister for the first time!!!
Dawson wrote a message from him and Aryssa in the middle, cute cute cute :)
MY BOOTS
Ava 9/16/2008 8:55 p.m.
My babys going to be 2 months old tomorrow. We should throw her a party!

Hey everyone, I haven't updated in a few days because there havent been many changes. She's still on the vent and prob will be for a couple days. At least. They're basically just waiting on her lungs to clear up, which we're learning can be a really L-O-N-G process. After breathing treatments every three hours and being suctioned constantly her lungs are still "boggy" crackly" just to name a few of the million words they've used. They decided to have a pulmologist (sp) stick a scope down there to figure out what is going on. She doesnt have pnemonia (GREAT news) but she does have some fluid built up in there which is causing some flappy things to not flap right so they had to change the vent settings. They also put her on a steroid which she gets threw her breathing treatment to try and help her lungs get stronger. They think a lot of the fluid is from the TEF repair and when she reflexes and aspirates it gets fluid into her little lungs. There's not fluid collecting on the outside like before it's all on the inside. Ava's really sensitive right now, she doesnt like people touching her, suctioning her, moving her, flipping her, standing close to her, or the trash ladys trash bags. She de sats!!! Like a lot of times today. Even after giving her morphine and paralyizing her (which always works) her heart rate still dropped along with her oxygen/ breathing. So they bag her let her come up and start again. She's just being high maintence today!!! My little angels starting early. She must get that from her dad. Speaking of high maintence, I can't wait till Eric works. I found the CUTEST "riding" boots at Nordstrom (online of course) today. (ava's de sating )They will last me forever and they're only 294.95. (There were another pair I liked even better but they were like five something. I thought that one prob wouldnt fly :) But oh I have to have them!!!! I will wear them everyday with everything, I'll even give up my Uggs. Hint Hint "darling". I don't really call him darling btw, it's a joke we have from some movie. You think he'll go for it? Prob not :( I AM getting Ava a pair of uggs next winter though, and they're a little pricey for a baby that's going to grow out of them, but she loves them. She needs them too! I've wanted a little girl since those things came out, so I could buy them for her. Soooo I met a new friend up at the hospital. She's like sixty something but I just feel so sorry for her. I have a soft spot in my heart for old people. J-K older people!!! Her grandson which is 3 is up here and just got diagnosed with cancer Wed. Her daughter and her daughters boyfriend are real winners let me tell you. Mom, remember how loser used to talk? Well this guy is 100 times worse. Sounds like he has a big pile of you know what in his mouth. They're outside smoking while their son is in the hospital room getting chemo (sp) and gripeing about having to wear a mask and a gown over their clothes. Seriously? Your baby has cancer. Idiots. Sometimes I wish my mom was here so she could lay into them. She would too, that's my mom, she's worse than me, if you can believe it :) (ava's de sating again)She always tells it like it is wether she should or not. hehe I love you mom :) I could go on and on about these people and the stories this lady has told me but I'll spare you. I just feel so sorry for her and that little boy. I apparently feel so sorry for her I gave her my number. She asked for it and I couldnt tell her no. Shes just one of those people you can tell ljust needs to talk and she's obviously not able to do it to her meth addicted daughter and her boyfriend. The little boys name is Dillon, so keep him in your prayers. Josie the other little girl I told you about is doing about the same as Ava right now. She's off the heart lung machine but still on the vent. Her lungs have some fluid in them as well. All these poor babies in here I just want to fix them all and make it better!!!! Anyway back to my new "friend" She keeps calling me, and introduced me to her sister and said I'm her adopted daughter. What? lol, she's just one of those people. And of course these people are nascar fans (the crack head ones)which Eric throws in my face everyday. I think he thinks its going to make me stop watching nascar by associating it with them. NOPE sorry cupcake noodle bug. Well I'm going to post some pictures (just a couple since there's not really a whole lot of anything going on right now) and get ready to watch some movies. My darling cookie muffin rented man maid of honor i forget what its called, but the one with McDreamy aka Patrick Dempsey and he also rented Baby Mama. Yayyyyy. I'm so excited, I've been wanting to see those forever!!!! Oh and one more thing, I'm pretty sure I got the ol' oooohhhhh she's cute but they really dont think she's cute kinda thing like ten times today. It's so funny really she's a beautiful baby and people in the nicu come up to me all the time telling me that. Well right now she's really puffy and isn't looking so hot, espically with her hats (she's sooo not a hat baby) and I can tell they're just saying it to be nice. So what did i do? I grabbed the photo album or computer whichever was closer and showed her pictures off :) I just wanted them to see how pretty my angel really is :) BTW I miss you already grandma, Ava does too!!!! xoxoxoxoxxo.... that's from Ava. (she just did it again... de sat that is)

Oh I have to tell everyone what happend a few days ago. This IDIOT actually idiots, there were two of them, x-ray techs came down to get a x ray of the feeding tube they put in Ava. Wanted to make sure it was in the right spot. Well they go to lift her (she's on the vent morons) and I ask them don't you need a nurse? They say no they've got it. Well they just pick her up like she's some rag doll, lay her down on this thing (without putting a sheet over it) and she de-sats, like quick. I tell them to stop while I go get the nurse. Do they? NOPE I'm walking down the hall as one of them is rolling her eyes at me to the other one and they're out in the hall, already took the x ray. I was HOT. The nurse goes off, and one of them asks to see her in the hall. She's like not right now you caused my patient to crash and I'm bagging her, youll have to wait. Well they roll their eyes some more and go and talk to whomevers at the nurses station. I mean the girl didn't even admit she was in the wrong. I was so mad, I was shaking. I guess they're not even supposed to touch babies on the vent. What would they have done if it came loose or unattached? I was ready to kill the lady. Wish my mom was here for that one too!!!

Ava's heart surgery

She's like oh gosh mom leave me alone with the pics I'm tired :)

"my aunt loves me" I think aunt barbara got her this??
getting her ready for her ambulance ride
she zonked out..... sleepy girl

How's everyone doing? I'm ok. A little emotionally drained but other than that, we're hanging in there. I just wish I could take my little girls pain away from her. It really sucks to be so helpless. Tuesday day was a big day, but Wed. a even bigger one. Tuesday Ava got to go on her first big girl ride (i still need to get a pic) in an ambulance. I will get a picture of it as soon as I see it again. I had to load all of her stuff in the car which took about 5 trips. It was sad for me, I guess because I thought when it was time to load her stuff up that we would be going home not next store for heart surgery. They got her over here to the picu, got her iv'd up, and she slept most of the night. We had our first sleep over together :) My sweet girl, she didn't even fuss for a bottle and went over ten hours without one. She was supposed to go down for surgery about 7:30am. She made it down there (which was one of the hardest things as a parent to watch) but after about a half an hour or so was wheeled back up to her room. One of the other patients, (an 11 month old baby girl named Josephine) whom had heart surgery the previous day had some complications. They needed the surgeon right away so they had to put Avas off for a bit. Long story on this other little girl but she's not doing so well, so keep little Josephine and her family in your prayers!!!! Anyway about 10:00 or so they got started on my little Ms. Ava., which might I add is the strongest little angel in the whole world!!! :) About 2 we got a call saying she was back in her room, everything went well and we could see her in an hour. The surgeon said that the hole in her little heart "impressed him" It was a lot bigger than he expected I guess. He patched it up (no wires for a temp pace maker) and she should be good to go. After 5 long hours I got to see her. She didnt even, still doesnt, look like the same baby. It's the saddest thing. We've had a few setbacks overnight and early morning, but hopefully those will be behind us soon. Ava's lungs are full of fluid so they're giving her breathing treatments every three hours, suctioning her out, and keeping her on morphine and a med that basically paralizes her for a short time. They sent some of the fluid and secretions from her lungs to the lab to be tested for infection. She keeps getting better then will get worse again. They've had to suction and bag her quite a few times, but after a min. or so her heart rate comes back up and she's stable again. See what I mean about how strong she is :) My poor baby is soooooo swollen, which you'll see in her pics. The nurses are calling her lips angelina Jolie lips :) After her surgery her heart rate would jump up a bit, we turned her mobile on and it went back down. We knew she loved her mobile but its funny that even in the sleep state she's in, it still soothes her. Hmmmmm what else what else? There's been so much thats going on it's hard to relay it all back to everyone. Well I'm going to post a few pics and try to get some sleep. The most sleep at one time I'm getting are from my naps. The great thing about here at the picu vs the nicu is one of us can stay in the room with her all night. They also gave us a sleep room that we can go back and sleep in. I'll keep everyone posted. If I've missed any calls from anyone and haven't called you back, sorry. It's been a really long couple of days. Too bad we can't just skip a week, huh? Oh yeah as far as her getting out of the picu and going back to the nicu we're not super sure yet. The heart surgeons nurse practitioner said she'd wouldnt be surprised if we're still here monday. She's still on the vent to, so my guess is we'll be here at least till Wed.

she's so swollen, these are her after surgery pictures, this last one i just took a few min ago. the others are from last night.

update

xoxoxoxoxoxoxoxoxoxoxoxxoxo look she loves it! i look possesed in this pic
she was smiling at her bouncy seat in this one
us gals!
daddys sweet pea... yeah for now, after her surgery she'll have way more energy and a lot more crying!!!!!!!!!!!!!!!!!!!!! that's ok though :)
awwwwwwwwwwwwww go ahead i know you're saying it

the cute but only up to 5 lb. outfit ava got to wear once. (my mom just HAD to get it)
grandmommy and gracie
had to get a pic with the mittens
ava and her doo-rag uncle phillip got her
look at my slippers

eric and aryssa making cheesecake


this is babys r us's "newborn" it would fit a 3 month old!
lookin a little rough....

Hey everyone! It's been a while since I've wrote, havent really been in a blog writing mood. Im still not but decided I better give everyone an update and share some pictures before my grandma gets on my bu-tay again. Ava got her first big girl bath this weekend. Normally we just give her one in her bed, but we actually took her tub in this time. At first she let out like a ten second cry/whine, then once she realized hey i'm not cold, i kinda like this thing, she calmed down. She looked up at Eric and gave the biggest grin I've seen yet. Of course him being a man didn't have the camera ready therefore no picture. Go figure.... men, sigh sigh. She smiled her first real smile and cooed at me (all at the same time) last week. I have the date written down but it's upstairs. I did get a picture of her half smiling. I put her in her ghetto fabulous bouncy seat and when the fish started moving or whatever you want to call it (it kind of makes this sick cat noise and kind of turns a bit) But of course I got the picture because us moms think of that kind of thing, we always have a camera right there at the most perfect moments, lol. I didnt get to spend as much time as I usually do with Ava this Sat. Me and a friend of mine had a garage sell. It went sorta ok. Actually it really wasnt all that great. Friday night we went and put out our beautiful PINK signs. We couldnt get one of the stakes in the ground so we had Eric do it. Well guess where he put it? Go ahead guess. He put it where nobody could see it. Nobody driving on the road would have seen that sign with bincoulars much less just passing by. It was facing the total wrong direction. Possibly people leaving the edition may have seen it but I'm pretty sure the only people or things that saw it were the ducks as they were leaving the pond. Again... guys, sigh sigh. Dawson decided he wanted this second chicken pox shot he needs to get into the nicu. I think he's realized that it's going to be a while before the baby gets to come home. Iwas hoping he would be able to see her before her heart surgery but it's looking like he's not. The cardiologist and heart surgeon got together today and talked. Ava's on the max dose of heart meds that she can be on and it's really not doing any good. It's controlling the congestive heart failure a bit but she's not really gaining weight like she should and she's using a lot of energy eating, crying, etc... you know all the norm baby stuff. He said even if we waited a few more weeks and got her bigger it wouldnt make a difference. She's not putting on that much weight to where it would matter. He seems pretty confident about the surgery and her recovery. He thinks it would be more of a risk to bring her home on the feeding tube and wait vs doing it now. So this week it is. Were not totally sure on the date and time yet, but it's prob going to be Wed. If not Wed. then Fri. for sure. I'll let everyone know how it goes. Well most of you will prob be up there at some time or other. Well other then Christy. Her "babys daddy" won't watch her kids so she can come up... like ever, but that's another story. (no Im not bitter) Anyway they will move her to the picu the night before and she'll stay there in her big girl room for her recovery time. (Prob around a week) Good news is I can stay there in the room with her!!! That makes me happy. It will be our first over-nighter together!!!! I won't be able to hold her and she'll be pretty knocked out on pain meds, but I'll at least get to be with her this time. After she's made a fabulous recovery they'll take her back over to the nicu, they'll work on her feedings, then she'll get to come home!!!! I can't wait :) Nothing else is really going on right now. No new news on the other kids. Dawson's doing great in school though. Keeps getting A's on his spelling tests, yipeeee! He gets a new guitar if he gets all a's and b's... he's trying!!! He got a new m&m game today, he's pretty excited about that. His mamaw got him a nintendo ds for his birthday, so that's his new fave thing right now. Aryssa was at her moms this weekend so no new updates on her really. She did get to slather the baby in kisses with me today though, that was fun :) Slather, is that the right word? HMMMMM looks funny. My grandma leaves for Cali this weekend. I'm a bit jealous!!!!! I want to go. If Ava wasn't sick I'd sneak in her suitcase. Maybe next winter we can make a trip down there!!! Erics birthdays coming up. Sept 11th. Everyone wish him happy birthday. He's getting old. The big 31. I think he's going threw a mid life crisis. He now gets up in the morning and runs then in the evenings goes and works out. I wish I had that kind of energy. I'm beginning to realize I'm a lot older than I was with my last baby and this little bit of extra flab on my belly and thighs isn't going to just walk itself off. Darn it! I had Eric put some music on his "zuma" for me so I can start getting pumped before my walk/run/mostly walk routine. I call it a routine but I've yet to start it. It's nice to dream isn't it? BTW just kidding it's the 12th.

a little big...