lovin' life!!!

well what can i say.....we are home and LOVIN' LIFE!!! don't get me wrong....we are SO GREATFUL to only be about half hour away from "the hotel on the hill" but you can only eat so much of "the rainbow cafe" food before you can't even stand to walk past it! hahaha. we are VERY glad to be home tho. tay is doing GREAT and is pretty much not needing anything for pain which TOTALLY amazes me!!! she is such a tough little girl! she is pretty much back to her normal self! :) especially when it comes to the eating department! hahaha. she's a good little eater that's for sure! :) we have been SO BLESSED for the way things have turned out!!! the surgery went better than planned, tay was a strong little fighter and came home within ONE WEEK!!! i cannot even EXPLAIN the blessings we have recieved with this little miracle of ours!!! as i was uploading my pics i noticed that i didn't post any from halloween! tay was a witch for my mom's halloween party and a pumpkin on halloween day. she was pretty much adorable! :) here are some pics from halloween....

here is tay with one of her new boyfriends.... :)

homie-tay. haha.we ran some errands one day and when we got home and i lifted her "germ cover" up and this is what i saw....ADORABLE!!!

who woulda thought a paper cup would be so fun to play with?!?! tay LOVES to drink from our cups so i gave her her very own and she knew exactly what to do with it! it was so cute!

our little family on surgery day before meeting with the surgeon

my baby girl after surgery..... :(

a pic of her xray after surgery....

recovery day 2

day 3...SUPER SWOLLEN!!! poor thing! you can just see in her eyes how yucky she feels!

day 4

day 5. out of the CICU!!! YAY!!! this was the first time i got to hold her. she just stared at me and put her hand on my face....so sweet....


the day before we went home

day 6. we are home!!! SO HAPPY!!!

ohhh the joy of giving meds....

you've all heard this many time but THANK YOU ALL for all the love and support and for EVERYTHING!!! we cannot thank you all enough!!!

p.s. i forgot to mention my baby is sleeping through the night like she use to before her surgery!!! yay! and i also forgot to mention that e came home with NO OXYGEN!!! :D oh happy day!!!

HOME!!!!!

YAY!!! you've probably guessed but we are home!!! and OH so happy!!! :D tay is doing GREAT and she is more than happy being home! i will post again with pics soon but i just wanted to let everyone know we are home, healthy, and HAPPY!!! :D thank you all for the prayers, thoughts, gifts, etc!

My baby

I've been waiting ALL WEEK to hold my baby girl and I got to today!!!! I picked near up and sat down and she just looked at me and stared into my eyes for a very long time and put her hand on my face. Oh I missed holding her SO much!!! She is doing great! They pulled her chest tubes and pacer wires out today and she is so much happier! She's like a whole new baby compared to the last couple of days! Oh I just love her SO much!!! She is having a sedated echo today at 2 so they aren't feeding her but she seems ok with that! We'll see how she does a little closer to 2.anyways! She is doing great today! Yay! Again, thank you to EVERYONE for all the prayers, fasting, thoughts, gifts, goodies, etc! We appreciate it SO much!!!

Update

Well, Tay is still doing good. Just recovering! They pulled one chest tube out today and they noticed a little more fluid in her chest this morning so they are gonna leave the other two tubes in until tomorrow and hopefully pull them out then! We are moving upstairs and out of the cicu today! YAY! We just love little steps like this one! Other than that she is doing well! Oh her poor belly is BIG because she wants to eat so bad so we feed her but she's having a hard time pooping! Poor bug! Hopefully with all the prune juice she's getting it'll flush it all put! Oh ya! Her white blood cell count went back down today so that is EXCELLENT!!! Thank you everyone for everything!!! P.s. If you are wondering why I haven't posted pics it's because I'm posting from my iPad and I haven't figured out how to get them on here. Haha but we have taken some everyday and I will be sure to post them once we get to go home!!! :)

Woo who!!!!

So we just got the news that Tay will be moving upstairs tomorrow and they will be taking all THREE chest tubes taken out as well! She's was draining quite a bit the last two days and today shes drained hardly any at all! GREAT NEWS! She still has a good temp without NO fever so that's great news as well! Now we just want her white blood count a little lower and we will be on our way home! We have been SO BLESSED since the day our little miracle was born and we are SO GRATEFUL for all we've Ben blessed with! Thank you for remembering our baby girl in your prayers!

Recovery....

Well Tay is still doing ok. This morning she is a little more puffy because they are putting more liquids (meds, food, etc.) into her and not as much are coming back out so hopefully with the diarrhetic she will be able to let a lot more out! Her white blood cell count is higher than yesterday and a little higher than normal so they are keeping an eye on her to make sure it's not infection. She doesnt have a fever so thats good! We are praying that it's not an infection so that It will be one less thing for her to fight off. With not having a spleen it makes it a lot harder to fight off infection so keep her in your prayers for NO INFECTION!!!! They are keeping up on the loratab to keep her as comfy as possible. They just took the RA line out so thats good. Again we cannot thank you all enough for the comments, Thoughts, fasting, prayers, goodies, etc. It means so much to us! Thank you!!!

A new day!

So today is a new day! Yay! The surgery is FINALLY over and we can move forward!!! What a relief it is to know it's over with! We are definitely happy! :) she was extubated last night at 630 and she's doing great! They will take the line put of her neck today as well as a BIG fat sticker off her head and they'll take her catheter out today as well! Sorry about my "easy term" explanation. It's easier to say BIG sticker than to explain it. Hahaha. Any who! She's doing good! She's had two bottles of apple juice this morning and she LOVED it! She was a hungry little bug! We were told that she will most likely be able to be moved upstairs tomorrow! YAY! That's such good news to us! All the little steps are just such a blessing to us! She's doing very well tho. We are SO SO SO blessed! To have such amazing doctors and nurses and such an amazing surgeon is SUCH a blessing! To have a healthy little baby who's made it through such a complex surgery is SUCH a blessing! Thank you for all of your thoughts and prayers. We cannot tell you how much we appreciate everything!

Update 3

Oh can I just say how much I LOVE my baby?!?!?! Oh I MISSED her!!! We are with her now and she is doing GREAT! The nurse said they are going to extubate her in just a little while and see how she does! Her numbers are PERFECT! All the doctors/fellows stop by to check on her and say she is doing GREAT so that is EXCELLENT news! We are SO happy to have great news! :) we cannot express how much we appreciate all of the fasting, thoughts, and prayers for our little miracle! Now we are just hoping and praying for a fast recovery with NO infection!!!

Update 2

Just talked with the surgeon. He said he is happy with how things went. They had to do more than just the Glenn procedure but it all went well. Waiting to go see my baby....

Update

Super quick post...Tay went in at 7:30. Hardest thing I've ever had to go through. Went on heart lung machine at 10. Surgery took 1 hour which way WAY faster than surgeon expected! That's GREAT news! They are warming her up now to take her off heart lung machine and then they'll do an echo and come talk to us. I'll try and continue updating...thanks for all the thoughts and prayers!!!!!

surgery.....

well we are home from pre-op. it's no fun when they need a good amount of blood and your baby is not a good bleeder.... :( my poor baby. but she is fed and happy now! :) we have to be at primarys at 6 am and we will hand her off to the doctors at 7:30. :( i just have to not think about it as much as possible. we will keep you all posted as often as we can. thank you for all the thoughts, fasting, and prayers for us and our sweet baby girl!!!

upate

here's a quick update on taylee. my computer is down so i can't put pics up. :( anywho! tay had her cath on tuesday oct 26th. oh my. handing her over to the nurses and walking away just KILLED me! :( and i can't even IMAGINE what it's gonna be like next tuesday (nov 9th) when i hand her over to go in for her surgery. i hate thinking about it. i'm trying to forget about it until tuesday. anywho, she did great during the cath and came off of everything just fine. they told us to expect to stay the night but tay was doing so well they sent us home at 5! :) so that was great! now we just have to wait until tuesday to go back down. :( i can't stand thinking about it. PLEASE keep little tay in your prayers that the surgery will go well and she will make for a fast recovery!

whats been goin on...

so i don't know if i've said this before or not but i think i'm only blogging once a month!!! i guess we have just been so busy that i'm lucky i can get a post once a month done! oh well! we have been having SO MUCH FUN with taylee! she is getting SO big! she now weighs a wopping 14 lbs!!! that's a beefy little girl if ya ask me! :) and i just LOVE it! we introduced veggies to her this month and she LOVES them! she eats cereal, veggies, and a 7oz bottle for almost every feeding which STILL happens to be about every 3-4 hours! i guess her poor little heart is just burning all her calories right up! but she is doing super! :) she LOVES her fingers, toys, binki....whatever she can get into her mouth!!! she is SO smart! she likes to take her binki out and play with it and throw it then pick it back up and put it back into her mouth! hahaha. it's so funny! she cracks us up! our insurance approved tay's RSV shots thank goodness!!! what a BLESSING that is! she got her first shot and she did ok. it took a little while to calm her down poor thing! :( but i'm glad she was able to get the shot before surgery! she is STILL sleeping through the night and i'm lovin it! :) but i have been reading on other blogs....i've noticed almost all babies that have had the glenn don't sleep through the night! :( is this because they never did before they had surgery or is it BECAUSE they had surgery?!?! while i'm on the subject of her surgery...to those moms who have had their baby go through surgery.....i guess i want to ask, how do i prepare?!? she will have her cath on oct 26th and the glenn on nov 9th. i have mixed emotions for SURE! i will be VERY glad once it is done so we can put it behind us but yet i cant even IMAGINE handing her over to the doctors and watch them walk down the hall with my littl baby girl..... it just KILLS me! it's coming up SO fast and i try not to think about it but where it's so close i can't help but to think about it. any advice from you moms out there would be VERY appreciated!!! anywho...taylee is doing VERY well! i guess she'll be doing even BETTER after surgery! which to me...i don't know if she can do any better than she is but i guess so! :) she is our little miracle and we just love her to PIECES!!! :) here are some of her 6 month pics. she was SUPER SUPER grumpy so i'm surprised i got the ones i did! :)

tay with her little baby. she LOVES it!!! :)

LOVE that smile!!! :)

yep! this is taylee. you might not recognize her with NO hair but it's her!!!

LOVES this binki!!!

looks JUST like her daddy!!! :)

this is tay at 10:30 at night! she is ALWAYS SO HAPPY!!! :)

5 MONTHS OLD!!!

oh my goodness!!! my baby girl is 5 MONTHS OLD!!! i seriously can't believe it! it's gone by SO FAST!!! she is just SO much fun! she is eating baby cereal and is starting to like it more! thank goodness! i need to beef her up as much as possible in the mext month!!! she is ALMOST sitting up on her own and she LOVES it! she is so funny! we will be driving in the car and i'll look back and she will be sitting up in her carseat! ha ha ha! it's so hilarious! she doesn't have any teefers yet. i thought she'd have the bottom two by now but nope! so we're waiting to see those come in. guess what!!! SHE ROLLED OVER!!! yep! i was OH so happy!:) she rolled over the day before her 5 month old birthday. :) now i lay her on her belly to roll and she just lays there. ha ha ha. poor thing! i think it just takes too much energy that she doesn't have so she just lays there. ha ha ha. so we heard back from dr. p. he said that after talking with the docs and cardiologists the results came back with 90% of them saying to go with the one ventricle heart. this is kind of what we wanted to hear. so that's good. but the only downfall is that she will need a heart transplant later (hopefully WAY later) in her life. she is a trooper so we think she'll go to her 30's or 40's before she needs one! :) anywho....so she will have her cath on october 26th. (i'm nervous) and then she will have the GLENN on november 9th. PLEASE keep her in your prayers that everything will go well and she will make a fast recovery!!! THANK YOU!!! here are a couple pics from recently...

this is a cupcake beanie but you can't see it very well. it's still cute tho! :)

little sunday photoshoot! i'm surprised she smiled for the camera in this one!!! :)

her 5 month old pic. :)

the latest news

well! it's time for our monthly post! we have been so busy we pretty much only update when we can! so this will be a long one! we had our 4 month wellness check up this month! tay had to get her 4month vaccines too! talk about KILL ME!!!! oh my heck! she had an oral vaccine and 5 SHOTS in her poor little legs!!! i've NEVER heard her cry the way she did! it pretty much broke my heart!!! poor little girl! she was a little fussy that day and the next two but she is all better now! :) she is in the 24th percentile for her weight (12lbs 9oz), 50 percentile for her height (24inches) and a little OVER the 50th percentile for her noggin! ha ha ha! she's got quite the little noggin! well i guess you would say a little big! ha ha ha. but not TOO big! :) we also had our cardio appt this month! this one i was nervous for. she had to have a sedated echo and for some reason i was nervous for her to be put to sleep. oh dear...if THAT makes me nervous then i'm in BIG trouble for what is ahead of us!!! she was not able to have formula after 8:30 so i fed her a small bottle at 7:30. she was not able to have breast milk after 10:00 so i saved up 3 days worth so i could give her a full bottle at 10! she only ate 2 ounces out of the 6!!! :( then she fell asleep until we left to go down to primarys. we checked in and got her x-rays. then we waited and waited and waited to the sedation lady to come in. at this point...2:30....she was STARVING!!!!! so we talked to her then she went to get the iv people. ha ha ha. i don't know what they are called! so they finally came in and pretty much pinned my baby down to the bed so they could find a good vein to put her iv in. TRAUMATISING!!! after 10 minutes of SCREAMING at the top of her lungs they were finally done and i was able to pick my baby up and hold her. she fell asleep as soon as i picked her up! i think they need to come up with a different way to poke the little heart babies. i'm sure all the screaming is not so good on their heart!!! any who, we started the echo and about ten minutes before they were done she woke up! ha ha ha! they gave her more medicine to keep her out of it and she just laid there with her eyes wide open looking around while they finished! then we went to recovery for half hour then we went back down to meet with dr p. well, it wasn't bad news thank goodness! after he looked at her echo he came in and said that the left side of her heart is not getting smaller like they intended that it would. that's great! but it leaves us in the middle of two options. 1-to make my baby a two ventricle heart which would include going to boston or stanford to do MAJOR surgery with a higher chance of not making it or 2-keeping her a one ventricle heart and moving on with the glenn. dr p said that he was going to present her case to everyone on wed to see what they all thought. well, he called me wed afternoon and said that 90% of the docs/surgeons said that it would be best to go with the 2nd option...keeping her a one ventricle heart. we have mixed feelings about this. yes we are happy that we won't have to go to boston/stanford for the MAJOR surgery and worrying if it will be too much for our little girl. but we are a little down about knowing that she will need a heart transplant later on in life. we've met with dr p many times and every time we have asked him how long he thinks she will go before she will need a transplant he's ALWAYS said probably at least 30-40 years! wow! that would be amazing! but yet not surprising because this little girl is FULL of surprises! :) so that is the latest. trav wants to ask dr p more questions about if we should send her info to boston/stanford and see what they think or if we should just forget about it and move on. if we do move forward with the glenn then she will have surgery in november-ish. sounds a little scary to us with it being rsv/flu season but like i said...she is FULL of surprises and she is our tough little bug! :) so i think that's about all i have for now. here's the fun part....PICS!!! :)

sitting in her bumbo playin with her toys

all dressed up for church!!! pretty much ADORABLE!!! :)

waiting for the sedation lady friend. ha ha ha

our battle wound from the iv

lookin at her bowl of cereal

not liking her first bite of cereal so much. ha ha ha

REALLY not liking her new cereal! ha ha ha!

chewing on her toy

look mom! no hands!!! :) yep....she's teething! no teefers yet but i'm sure they'll be comin soon!

beautiful baby

so we heard about a beautiful baby contest on fox 13 so we decided to enter taylee into it. so PLEASE take just FIVE MINUTES and go vote for her! here are the simple steps....

1- click on this link http://fox13now.upickem.net/engine/Details.aspx?p=V&c=20074&s=4781428&i=1#SD
2-click on "save vote" under her pic
3-register to vote
4-go to your email to confirm your vote
5-click on this link again http://fox13now.upickem.net/engine/Details.aspx?p=V&c=20074&s=4781428&i=1#SD and make sure it says...."vote is saved"

it sounds like its a pain but it really only takes just a minute!!! if you have more than one email address feel free to register and vote with each address!!!! send this to everyone you know as well so our little bug will win this contest!!! :)

THANKS!!!

SO BIG!

oh dear! looks like it's been another month that has gone by since i posted last!!! and yep! our little bug is now one month older...4 MONTHS OLD!!!!! she is seriously getting so big! she is now weighing in at over 12 POUNDS!!! now tell me this little girl doesn't like to eat!!! :) she is SO MUCH FUN!!! i have said this before but i just can't get enough of her! we just have TOO much fun all day every day! :) we haven't been up to a whole lot lately. just same old same old. :) we went to grammee's house and played with the cousins for a little and then she threw a FIT! so we were getting ready to go home and i packed her up and went out to start the car while she stayed inside screaming! i came back in to get her and this is what i saw....

ADORABLE!!! jacob, livie, and maddie were all sitting by her rocking her car seat and singing "you are my sunshine"!!! is that not the CUTEST thing you've ever seen?!?! i had to snatch a pic!

here is my little bug on her 4 month old birthday!!! i've come to a conclusion that she is going to look scared in every pic i take no matter what i do! ha ha ha!

dad left to go to mexico for a couple days for work so we had fun while he was gone and painted bug's toenails! let's just say it wasn't the easiest.... ha ha ha! she would NOT hold still! so this is what they looked like....

you can't see very well but pretty much her whole toe was painted! ha ha ha and this is what they looked like after i cleaned them all up!

so stinkin adorable! :)

so like i said in our last post....she ALWAYS has to have SOMETHING in her mouth! so i decided to get her these teething rings that you put in the fridge to cool them so they feel good on her gums. i gave one to her and she went CRAZY over them!!! i can't imagine she's teething already but she sure does love these! :)

taylee got to go on her very first vacation!!! well....it was kind of a vacation. we call it a vacation cause we left our home town! ha ha ha! we went to st. george for great grandpa's funeral. :( bug didn't get to meet him cause he lived so far away but i know he sure did love her just by seein her pics! we were a little nervous to be driving so far and not sleeping at home but guess what!!! she did AMAZING!!! she pretty much didn't cry the whole time!!! she was SO GOOD! she's always been such a good baby tho. :) so here are some pics from our little trip!

taylee with her cousin hallie. they are only 5 weeks apart! :)

her very first swimsuit! ha ha ha! it was so stinkin adorable on her!

bug and daddy all ready to go swimmin for the very first time!

she LOVED it!!!! :)

so back to the sucking on things....she sucks on her finger SO MUCH that her little finger was bleeding from it bein so dry and what not so she got her very first bandaid! we had to cover it up so she wouldn't suck on it but it didn't work very well! ha ha ha

this is on our way home from the funeral. we had to stop to warm up her bottle....(very first ALL formula bottle! i wanted to cry while i was feeding her!!! :( but i've done all i can to get as much milk as possible and i think it's pretty much gone! :( ) so we stopped at this gas station with the famous big rocking chair and i made trav get a pic with us on it! ha ha ha!

now tell me she is not a happy baby!!!! :) oh my heck! this was how she was the whole way down and back! i just LOVE those cheekers! :)