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!