taylee's first christmas!

taylee had her very first christmas this year and it was SO MUCH FUN!!! i was SO excited! i'm sure the older she gets the more exciting it will be but this year was pretty fun! christmas eve we went to gramee's for a little party then went to gram's for a surprise visit from her aunt, uncle, and cousins! :) then christmas day.....with having an 8 month old that has NO idea what is going on i thought we would be able to sleep in and what nots...i was WRONG! this little stinker decided to wake up at 4 in the A.M. and decided she wanted to eat!!! what the?!?! who does that?! hahaha. so we fed her and went back to sleep a little while after. then she woke up at 8. which is a decent time to wake up so we got up to begin our christmas! we fed her then opened presents. she got SPOILED with all kinds of new toys that she LOVES!!! it's so funny to me that she knows she has different toys than the ones she's been playing with the last 8 months. after opening presents at home we went to grandpa and gramee's house to open more! she was spoiled there too! she got lots of books and clothes and toys! yay! she got a little dog that she can pull around once she decides to walk....which will be MONTHS!! she doesn't even crawl yet! when she opened the present with help from dad she grabbed the dogs face and pulled it straight to her's with her mouth wide open! hahaha. she got these different colored toy balls that make different noises and she loves them! she loves to throw them off of the high chair tray. silly girl! then after she took a little nap we went to grandpa and gram's where she got more toys! oh man....lets just say she won't run out! haha. i even have some that i bought her that i didn't open and am thinking about re-gifting! haha. shhh....don't tell anyone! we had a very fun christmas and we were SO HAPPY to have spent it with our little miracle! :)

tay checkin out her new bug gloves that we put on her feet for socks. (i forgot to bring some with us!)

tay and gramee

playin on the floor...of course her favorite thing to play with was this bag of socks for her cousin...

some of her new favorite toys!

our little fam. look at tay just staring at that puppy! :)

opening presents with daddy

the cousins on christmas eve in their new christmas jammies! thanks gram! :)

tay and hallie. these two are only a month apart!

pappy and tay....so cute...

her ADORABLE little outfit on christmas eve. thanks to our most favorite neighbors for this adorable tutu!! :)

that's about all we have for our christmas post! we hope you all had a very merry christmas! :)

8 months old!

wow! i can't believe my baby is 8months old already!!! it seems like just yesterday that i had her!!! she is getting SO BIG and she is almost acting older too! it almost make me baby hungry already! (note:i said ALMOST!!!) hahaha. any who! tay is doing just awesome! she is sitting up alone, eating non-stop (like always), hardly ever cries, smiles, talks, uses her sippy cup all by herself, and loves to sit in her high chair and eat her dissolve able treats! she weighs 15lbs 6oz and is 26" short. hahaha. she is in the 30th percentile for height and 10th percentile her weight. as for her noggin....it's big! hahaha. i think he said 70th percentile! haha. oh dear! tay LOVES her daddy! as soon as he opens the door when he gets home from a long days work she looks straight at him and gets the BIGGEST grin you have ever seen! it is ADORABLE!!! she gets so excited to see her daddy and play with him! they have such a cute bond. i just love it! :) he is such an amazing dad! tay's oxygen is at a whopping 92!!!! amazing! she is still on two diuretics as well as her ammox (for no spleen) and she also takes 1/2 an aspirin a day. that's all! she'll most likely come off of her diuretics when we go to our next cardio appt. on jan 31st. woo whoo! we are SO blessed and SO grateful for her and for her health and strength! she is TRULY our little miracle! i don't know how i went so long (3 years) without her!!! i love her like nobody will ever know!!! she bring SO much joy into our lives! every morning i wake up she makes my day! i roll over and look at her in her playpen and she gets a HUGE grin on her face! i just LOVE it! as you know we have been hibernating since a week before her surgery so we don't do much. haha. just play, eat, and sleep all day! :) here are a couple pics of what we've been doin' at home lately!

look at those cheekers!!! :)

helpin' mommy with dinner. she looks blue here but she is nowhere near blue! yay! :)

christmas sunday we decided we could BOTH go to church together and that it was ok to take tay this week. i didin't buy her a christmas dress because i wasn't planning on taking her to church but we did! so she wore this adorable white dress. i thought it fit in with the christmas theme. :)

not so happy to have her pic taken. hahaha.

and here is her 8 month old pic! pretty much adorable! :)

we cannot thank you all enough for the continuous prayers, love, and concern for our sweet little baby. it means so much to us! we hope you all have a VERY merry christmas and remember the TRUE reason of christmas! :)

1 year ago....

one year ago today our world was turned upside down. a year ago today we found out that our baby girl had many different health problems. here is part of my post i made a year ago....we went to our 20 week appointment we ran into a couple things that didn't look right so my doctor sent us to mckay dee to get a better look at her. well, after a few hours of ultrasounds and talking we were told unfortunately we had to go down to primary children's to get a fetal echo. we were told she has a VERY RARE diagnosis called hederotaxi. she has some problems with her heart and her stomach is on the wrong side of her body. :( can i just tell you....it was honestly the HARDEST thing i've ever been told and had to go through. to know that the little baby inside of me has health problems that you can't do anything about until she gets here just kills me! and when she is here, it's still going to be hard. to send her into get open heart surgery at such a young age.....it seriously just kills me. but we are being as positive as we can be. we are given challenges in this life for a reason. yeah you can ask "why me" but that does no good. you can't go through life being down and negative about trials that you are given. so we are doing the best we can! we know that heavenly father will do what is best and he will take care of us and the baby. ....wow! for what we were told a year ago and the outcome that we have been blessed with is just AMAZING!!! one year ago we were told that she may not make it. we were told to not plan on seeing her or holding her when she got here. we were told to plan on a long hospital stay and that she would need open heart surgery at just a couple days old. can i just say my baby girl has proven them WRONG!!! :) she came and we were able to see her and hold her precious little (big) body. we heard her first cry that was the best thing we had heard since we found out we were pregnant!!! ten days after being born we were able to bring our miracle home....SURGERY FREE!!! WOW! six and a half months of growing and bonding with mom and dad and it was time for her first surgery. we had dreaded this day to come. but we knew it had to happen sooner or later and that it would be better to do it while she was so healthy. as we handed her over to the anes. we did not know what would happen. if it was going to be our last goodbye and hugs and kisses or if she would be just fine and come out just as perfect as she was going in. of course we had to be positive but handing your baby over not knowing what was going to happen it was hard to be positive. 6 hours later we got the phone call we had been waiting for all day. she is done and surgery went well! what a relief that was to hear that!!! our little baby truly is our little miracle and we have been SO BLESSED to have her in our lives! yes we do know that we still have trials ahead but if we continue to have faith we know everything will be just fine. the last 7 months have been the BEST 7 months of our lives!!! we just love tay MORE than anything!!! anyways, she is doing GREAT! we went to our post op appt. on wed and the docs were VERY happy with how well she is doing and how AWESOME her O2 was at an amazing 92!!!! YAY!!! here are a couple pics of what we have been up to since we began hibernating...

sponge baths :)

sitting up all alone for the first time! :)

playing with our toys! (the day after we got home and she was rolling around!!!)

layin on the couch with mommy

and wearin' mommy's shirts for jammies! hahaha

WE LOVE YOU BUG!!! :)

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!!! :)