Kayla Mae

Old Pictures

2012-01-25T21:05:00.000-05:00

Last night, Kayla, Lily and I were looking through pictures on my phone. They love to look at pictures- anyway- we got to the pictures of Kayla in the hospital this past May....Kayla first asked what that thing in her nose was- which made me believe she doesn't remember a thing. Which is good. Very good. In fact, great! But then she saw all the pictures, and she kept saying "aww, I'm sad" in the saddest voice. Soo we had to stop looking at the pictures because I was about to cry.

She does remember a little- she cried and cried when we took her to see Deda at the hospital when the nurse came in to change his IV's.. my fault tho, I told her to hold up her hands.. bad joke. Way too soon. So she remembers a little.. but she did very, very well at her x-ray a couple weeks ago- no tears.

I guess there really is no point to this post. I was just thinking of how well she is doing. Almost 3. And every day... she seems older and bigger to me. I love her so- and I am truly thankful to have her here with me.

happy! :)

Christmas 2011

2011-12-27T13:23:00.000-05:00

We had a very Merry Christmas this year. The girls enjoyed every minute of it! I know I've said this on Facebook but I just want to thank Mari-belle the elf again.. who ever you may be and the anonymous gift left on our door step Christmas Eve night.. you are both very kind. I would also like to thank Nina and Papa for their gift to our family, and Mema and Deda for the gifts they gave the girls, Jer and I. Also, our neighbors, the Levendusky's, thanks for the YUMMY cinnamon rolls (these were homemade and ABSOLUTELY AMAZING) and for the gifts you gave to the girls. And last but certainly not least, Aunt Terry and Uncle Larry's thanks for all the gifts to the girls- they loved them!

decorating cookies (again)

Daddy JUST got home, and the girls were VERY ready to open gifts

Lily's first gift.. <3 So slow and she enjoyed it when she got it opened..

this gift is always a favorite!

I couldn't really get a pic of Kayla opening gifts bc she did it so fast.. so this is her after all gifts have been opened :)

Loves her new Rapunzel dress and Cinderella dress. :)

this is not a new gift, in fact it's two years old.. but Lily LOVES to play with the pony.. she is saying "weeeee"

Uncle Tim and Uncle Darren got the girls matching art desks.. They LOVE them!

Uncle Larry Jr got the girls a princess CD player with the microphone... I am thinking we'll need to get another microphone as this was such a hit with both girls!

Make a video - it's fun, easy and free!
www.onetruemedia.com

K's Dance Recital

2011-12-18T08:54:00.000-05:00

My little CDH Miracle! She absolutely LOVED dance class.. and the recital! She was always excited to go to dance class every Monday and the day of her recital, she had no idea it was going to be like this- I mean I tried to explain there would be a lot of people, but words could not describe how packed this place was. A lot of parents had to stand on the side... it was crazy! Jer and I thought she'd just stand there.. and not do anything.. but she did do some of her dance. I am so proud of her tho- I was soooo nervous for her! I had to fight back tears when she was done. Not only did she LOVE her dance, but she wanted to watch the others too, and our friends were there with their daughter, Gracie, and she waned to watch her dance. It was just sooo cute, she was in love with the whole thing! :) and just in case you aren't sure, she is the one on the left end, blond little cutie.. sort of looks as tho she is in awe... <3

Friends

2011-12-11T19:32:00.000-05:00

Last night, we went over to our friends house- Courtney and Dave's- to enjoy some snacks and each other's company. The kids always seem to have fun playing.. Kayla especially bc she just LOVES Gracie!! Gracie, 6 years old, and Kayla 2 years old.. she just looks up to her and it's ADORABLE! Kayla is into all the princess stuff bc Grace is.. and Gracie is so cute with her. She will play with her, dress her up, and send her home with some toys she doesn't usually play with any more. Kayla just loves it!

Lily loves to play in Gracie's room as well, until Brody, 3 months younger than Lily, comes by- :) It's so cute, she'll like Brody SOMETIMES, but most times, she is not a fan.. and Brody just follows her around.

Anyway- K and L had a great time last night. They had fun playing with different toys, and eating oreos! :) Then they got to watch a Christmas movie. It was a good time had by all.

the kids, minus Brody, watching a Christmas movie <3

Lily- not loving Brody at the moment.. haha

but how could she not- look at that cute smile!! <3

Thankful November 30

2011-11-30T18:33:00.000-05:00

30!!! Last Thankful November! :) So last but most certainly not least- I am thankful for all of you. You help me spread awareness of CDH, brag about my children and best of all I get support from all of you when I am in need of some kind, helpful or supportive words! So thank you and I hope you all have a Merry Christmas or Happy Holidays- which ever you prefer!! :)

Thankful November 29

2011-11-29T22:44:00.000-05:00

29. I am thankful for chances!

Thankful November 28

2011-11-28T19:06:00.000-05:00

28. I am thankful for Skype! With Skype, my girls can talk to their aunts and uncles, and their Nina and Papa. We don't get to see a lot of my family so Skype allows us to 'see' each other from far away. <3 It's a wonderful thing!

We got to talk to Nina the other day, and Papa on a different day. Thank you Skype for allowing my girls to see their grandparents as often as they wish. <3 These are just some pictures from the summer- reminiscing - fun times together!

Thankful November 27

2011-11-27T20:49:00.000-05:00

27. I am thankful for quiet evenings and Christmas movies!

Thankful November 26

2011-11-26T18:14:00.000-05:00

26. I am thankful for beautiful warm-ish days on November 26!!!! I can not believe how nice it has been.. very strange, but I am thankful for letting the girls go outside without bundling them up seeing how Lily isn't a huge fan of that. :)

enjoying the lovely weather today with the ability to move.. but both of them just sat.. ha!

Thankful November 25

2011-11-25T20:35:00.000-05:00

25. I am thankful for a wonderful husband who claims to have no care in the world for the holidays.. but put up a ton of decorations last night for me!! He went above and beyond this year .. lights on the porch, lights and garland up in the living room, candles in the windows- and of course the tree. :) I'm sure he did it for the girls and their reactions to all the lights- but I LOVE it!! :) I'm a huge fan of all the Christmas lights and decorations!

Thankful November 24

2011-11-24T19:30:00.000-05:00

24. Happy Thanksgiving! :) I am thankful for quite a bit and writing up my 'thankful novembers' has been a great reminder of that. Tonight I am thankful for good food and great company. I am thankful for my children and their differences. I am thankful for my husband and his parents and all the help the offer us. I hope everyone had a great Thanksgiving... and my heart goes out to those who didn't get to spend it with family or loved ones. Or those who had to spend it in the NICU or any hospital setting.

Thankful November 23

2011-11-23T13:11:00.000-05:00

23. I am thankful for the first snow fall of the year.. :) No, not a fan of snow, but with kids, it takes on a whole new meaning. It was a fun experience for us all.. well maybe not Lily.

Kayla's first reaction to the snow this morning - was "aww look at mom's car (starts crying)... oooh I don't like snow" then she told me "I don't like snow, I can't walk in snow in my socks" hmm Kayla, Mommy doesn't usually let outside in your socks.. sooooooooooo hahaha! But she LOVED it when she was out.. unless she fell-

then she would say "will you help me please, I'm stuck in the snow" :)

we took a family picture- that didn't turn out so well... Lily was quite unhappy when Jer knelt down.. so we had to stand, and I'm not a fan of the camera not being at level of our heads.. so it didn't work but Kayla asked to take another photo as Jer was taking poor Lily inside.. so we got a nice pic together :)

this was L- before going out- as I was putting more and more clothing on her.. and then she continued to cry bc she couldn't really move when she was outside... and usually she LOVES to be outside.. so she was unhappy!! Poor girl! Winter clothing really isn't fun friendly for babies..

Thankful November 22

2011-11-22T18:05:00.000-05:00

22. I am thankful for my quiet, small home that keeps me and my children warm on these cold winter days.

nice and snuggley warm!!

Thankful November 21

2011-11-21T19:06:00.000-05:00

21. I am thankful for K's dance teacher. She teaches several classes..several different ages but a dance class for 2 year olds- ha she's nuts!! haha :) She is really good with them though.. and today for the first time, I saw K do something w/o me right next to her to guide her through. Yes she is two years old and isn't really all that independent.. :-/ but I'm working on it. Anyway- today K's dance teacher wanted to conduct the class w/o the mom's helping.. and K did AMAZING! I had to hold back tears- it was my first glimpse at K of being truly independent. She looked back at me every now and then, I'd give her the thumbs up with my goofy looking proud smile.. and she'd go back to paying attention. She was so cute! Ugh I was so proud of her tonight.. crazy I know- but I had that moment bc of her dance teacher..! :)

my shining star <3 who absolutely LOVES her dance class :)

Thankful November 20

2011-11-20T20:14:00.000-05:00

20. I am thankful for wine and my sisters of course! <3 'nuff said!

no- i'm not really drinking beer- but I was kind enough to share my wine with Dora.. so I think I stole Dad's beer! ha!! :) Love my family!! <3

Thankful November 19

2011-11-19T09:19:00.002-05:00

19. is posted on www.cdhfamily.com :)

Thankful November 18

2011-11-18T18:55:00.000-05:00

18. I am thankful for BBQ's!! When you have a bbq most of the time you are inviting over friends and family to enjoy the yummiest food and great company!

Jerry and Kayla watching cars ... and K telling him the color of the car. I think Nina and Kayla made this game up..

shucking corn outside Nina and Papa's house for our BBQ :) K helping, of course.

and then, of course, good drinks... well this is a good drink for Jer.. I'd need a nice glass of red wine! :)

Thankful November 17

2011-11-17T19:29:00.001-05:00

17. I am thankful for hugs! And I'm the luckiest girl in the world bc my girls and my husband give the BEST hugs!!! No lie- they really honestly give the BEST hugs!! You can feel the love.. makes any bad mood, or bad day completely forgotten!! <3 Hugs from family you haven't seen in a LONG time are amazing, hugs from a loved one 'just because', or a hug when you get home from work.. AMAZING! :) I'm a hugger! ha

a lovely hug! <3

a not so sure hug... <3 hehe

a snuggly hug! <3

a squeeze hug.. <3

a sleepy hug <3

an 'i love you at this moment' hug.. <3 hehe

a 'thanks for supporting CDH and always loving me' hug! <3

Thankful November 16

2011-11-16T20:41:00.000-05:00

16. I am thankful my warm bed to sleep in... and a warm snuggly husband right next to me! Our bed may have seen better days and need an upgrade, but I'm certainly thankful I have one..! I do know a lot of people do not have that comfort.. and that makes me sad. :( So I needed to put it out there that I am thankful to have a bed, with warm blankets and a mountain of pillows! I am also thankful that my girls have a nice warm bed to sleep in.. with their stuffed animals and favorite blankies.. :)

Liller Lou back in May- :) <3

an old photo- but this was K, her first night in a 'big girl bed' :)

Thankful November 15

2011-11-15T20:21:00.003-05:00

15. I am thankful for my camera that snaps the memory for me to keep forever... if you know me well, you know that I do not have the greatest memory.. so my camera serves as my memory! :) I am big on taking pictures- just wish I had a better camera, but for now, what I have certainly does a great job! It even has a great timer on it so I can be a part of the picture too.

a moment that rarely happens- and the camera got it! :)

having fun in the Fall leaves outside of Nina and Papa's house .. :)

the girls! thanks self timer! It was a beautiful day in October, so the girls and I went outside .. and I never leave the house w/o my camera.. they were just sitting by the tree, so I jumped in! :) Jer was at work, but it would have been a beautiful family photo if he was home!

a family photo.. again with the self timer! :) This was a horrible time- my poor neighbors even left their own yard so we could take a picture bc my kids wanted nothing to do with pictures.. and we only have one of these cars, the second one is from our neighbors.. which stopped the crying long enough to get the family photo done.. and it's not even my favorite.. ha but it was quite a job to get this pic done! :)

will never forget this- K's first REAL laugh/smile at the hospital after surgery!

my sister Angie and her daughter Alyssa- had so much fun with Alaina wanting to jump over and over and over again the pool at our first annual family reunion! <3

my sister Sandi was standing behind me showing my nephew Julian what to do for a pose, and he would do it.. there were a TON of them.. and Julian had the best time posing for the camera .. it was ADORABLE! Also at my first annual family reunion!

Thankful November 14

2011-11-14T18:35:00.000-05:00

14. As crazy as it seems, I am thankful for Pinterest. I know, I know, it's a silly thing to be thankful for. But if I really think about it, since I have been introduced to Pinterest from my sister in law, Meghan, I have been more creative with things in my home. (ie. toilet paper rolls, paper towel rolls, salsa jars, pepsi bottles, coffee cans, etc.) I have been doing more crafts lately and I love it. Instead of spending a ton of bucks on cute decorations for my home, I'm making them.. and they don't look so bad either. :) It has also helped me come up with fun things to do with my children.. they appreciate it as well, I'm sure. :) Pinterest has sparked the creative side in me... I needed that push!

a sign for Halloween..

the tutu I made for Kayla.. :)

cake pops- homemade.. no cake pop maker..:)

a Christmas decoration- not so sure about this one, may change the flowers.. don't know yet.

Thankful November 13

2011-11-13T19:40:00.000-05:00

13. I am thankful for having at least ONE child who enjoys food! :) As we all know well, Kayla doesn't eat well most times... she does SOMETIMES.. and we are shocked when it happens, but most of the time, I have to trick the girl to eat. But.. Lily.. LOVES to eat!! There are a few things she won't eat, but not much!! :) Love my girls!! thankful for them both, but today, I'm thankful for one easy eater!! :)

Liller lou eating and saying "cheese" :)

Kayla just left... and this is Lily's way of saying - wait where did she go?

looking at daddy and saying "cheese"... such a happy girl at the dinner table!! haha

Thankful November 12

2011-11-12T21:10:00.000-05:00

12. I am thankful for lollipops. They make for a peaceful shopping trip. :)

Liller lou passed out as soon as we got back in the car, but had a death grip on her lollipop. :)

Thankful November 11

2011-11-11T15:06:00.000-05:00

11. I am thankful for our Veterans.. those who have served and for those who are still serving. I am, however, saddened for those families who have had to sacrifice their loved ones for this and past wars! :-( A special thanks to those I know, my brother in law, Tim and my cousin Eddie.

Eddie Touchette- Aunt Ellen- I stole this pic off your FB page :) Hope that's ok

Tim Olmstead and his group..

Thankful November 10

2011-11-10T19:02:00.001-05:00

10. I am thankful for music. I'm thankful for people with the ability to sing! Music, singing, it's a great escape when you need one- get in your car, sing at the top of your lungs... it's great! :) I was listening to ABBA this a.m.... yes I do like some of their songs.. :) Dancing Queen to be more specific.. and it made me miss my family! We are the dancing queens and kings of the dance floor every where we go! :)

like I said- we are the dancing queens and kings!! :)

PS- please send your thoughts and prayers to Kamryn Hope.. she had her reherniation surgery yesterday and is now on the mend. The surgery went well but the next couple of days will be just as tough for Kamryn and mommy!

Thankful November 9

2011-11-09T19:29:00.000-05:00

9. I am thankful for medicine. My children have been sick a lot lately and I am thankful that Motrin or Tylenol are there for me when they need it most. They only get it at bedtime, but it's their favorite part of the day... strange I know, but they love their medicine. I am also thankful for Vicks and Vicks Plug In! I worry with K not breathing well most times, but it's a helpful breathing tool for both of my little girls.

Kayla and her Motrin... when she was a baby and needed a lot of meds... she was NOT like this... it was a lot harder... :)

Liller lou's Tylenol... :) She wasn't always easy either- but never really needed much meds :)

Thankful November 8

2011-11-08T18:07:00.000-05:00

8. I am thankful that at this stage in my kids life- a kiss heals all. :)

bruises of all kinds - a kiss will heal it and wipe away the tears

Thankful November 7

2011-11-07T22:00:00.000-05:00

7. I am thankful for holiday traditions. All when I was growing up my family had tons of holiday traditions. For Thanksgiving we would ALWAYS have pizza the night before - a tradition started because of my Grandpa - and then there is the HUGE meal we ate together.. then for Christmas the girls would make Christmas cookies and decorate together every year while listening to Christmas music, on Christmas Eve my family would go to the church for the Christmas Eve Mass... the church was always so beautifully decorated... then we would get home, eat a TON of snacks... Dad would get his paper and pen out, and we would write a letter to Santa Clause. Every year! We were still doing the letter thing when I was in college! Then we would put our stockings on our dining room table at our seat.. and Dad would read us Twas the Night Before Christmas.. and then we'd watch a Christmas movie.. I enjoyed that more than anything about Christmas. My siblings and parents all together.. was the best part! I miss that... I'm glad I have my own family to start our own traditions or carry on ones I fell in love with- (which would be all of them) :) But I do miss getting together with my family.. :( But holiday traditions really make a holiday. It's not the gifts...it's the company.

a gift from Nina and Papa last year to help carry on some tradition- :)

Thankful November 6

2011-11-06T15:34:00.000-05:00

6. I am thankful for the D'Angelo's. I do hate how we met...however, our meeting was such a blessing. Thankfully both of our babies beat CDH, time and time again they continue to fight it as well, but the D'Angelo's... they were going through what Jer and I were going through and still had the heart to be there for me when I was at the hospital with K. They were there to listen to me, help me, guide me and go with me to the doctors for myself!!!!! Even when K reherniated.. they were at the hospital almost every day!! Brought me medicine for headaches, food and water/juice.. but most of all, great company, they were lifesavers!! I can not thank them enough for being amazing friends! I hope Charlie and Kayla will grow up to be the best of friends! :)

us and the D'Angelo's eating ice cream... we went to the playground, dinner and ice cream the night before K's surgery... they were so sweet to hang out with us the night before- otherwise it would have been a great time to think of all the bad things that could happen the next day....

Thankful November 5

2011-11-05T20:00:00.001-04:00

5. I am thankful for the Ronald McDonald House! This house has helped us our twice now and so many other families. It was hard to think about living there.. but once we got there, after K was born, it was so nice. It was a beautiful home! There were lots of volunteers who came every week to make huge meals and they even had family nights- where all families would eat dinner together made from some volunteer. I never did join the family dinners- I was always at the hospital- but it was nice for those who were in different situations! There was always a ton of food available for everyone to eat, you could go out and buy your own, label it and know it would still be there in the a.m. They offered a bus to the hospital and back, and if you had your own car, they gave you a free parking pass in the parking garage!!! All for a very small price! I don't know what Jer and I would have done w/o the Ronald McDonald House!! (Syracuse, NY) but I'm sure all are just as nice! :)

March 2009

Thankful November 4

2011-11-04T17:35:00.000-04:00

4. I am thankful for my large, loving family! My siblings and parents are the best!! I am thankful my mother didn't stop at two children... like most of my siblings have.. mainly because I LOVE my big family.... it's the perfect size. I miss everyone like crazy..:( I am also thankful for my other family- my in-laws. They stink at having their family photos done, so no pic will be posted of them! But I love them all too! :)

Thankful November 3

2011-11-03T19:26:00.000-04:00

3. I am EXTREMELY thankful for doctors and nurses! Especially those who saved my baby girl!! It's a tough job they have - both nurses and doctors and it takes a special person to do it!!

This is the man who has performed 3 surgeries on my baby, two of them major surgeries, to help save her life!
We LOVE him!! Unfortunately he is retiring this year... we will miss him! He's the best doctor ever! Very caring for the patient and the parents!!

I am thankful for...

2011-11-02T21:22:00.000-04:00

Ok- so I know a lot of you are doing this on facebook or your blog.. so I'm joining. I had actually thought about it before November came, but I already broke it. I want to share things I am thankful for everyday in November, so since I'm already a day behind I have two for tonight... I feel it's important for me to share what I am thankful for since, somedays, I'm finding it very hard to be thankful for much...

so.. here we go..

1. First and foremost I am thankful for my two beautiful girls. My girls make me smile, laugh and cry almost every single day. I don't know how I ever lived life w/o them to be honest. Kayla has taught me so much about life and she's only 2!! Poor girl has been through much more than I could ever imagine! And yet she manages to play, love life, and laugh every single day. She is one tough chick! Lily drops everything she is doing and dances at any hum of music... somedays, I think I should do that and all my worries will fade for that moment.. such a lesson from a 1 year old.

my loves on Halloween day.. it was a gorgeous day!

and then for today...

2. I am thankful for my husband who can keep me from going crazy at times. He was so strong and brave when K was at the hospital (both times, birth and the most recent surgery).. I really don't know how he did it. He had to worry for himself, and me. He held strong at every moment just to help me through. I love him more with every day that passes!! Yes, there are days where he stresses me out more than anything, but that's Jerry- that's what he does. ha!!! He's a great cook, a fantastic cleaner when he gets obsessive compulsive.. but best of all, he's the best hugger and that helps at the end or beginning of a very bad day! I love you Jer!! :)

Red, White, and Blue

2011-09-11T20:50:00.000-04:00

Today, Kayla, Lily and I wore red, white and blue to honor those who have lost their life due to the 9/11 attacks 10 years ago. 10 years ago today I was in my freshman year of college in Cortland.. walking back from class when a friend yelled over to me to tell me that a plane just flew into one of the twin towers.. I remember trying to call my mom and dad for a long time.. they don't live any where near the city but I wanted them to explain to me what in the world just happened!!! Ugh! What a turning point in life... anyway we wore our patriotic colors today in honor of 9/11.

ps- daddy was at work.. wearing all blue.. :)

For Fun..

2011-09-06T19:10:00.000-04:00

Bro-Stach...

Princess Kayla - saying 'cheese' but doesn't get the concept that you are also supposed to smile! ha

Fun ride with Papa- she LOVES the 4-wheeler! :)

and the 'BIG GIRL BED' .. she did GREAT her first night last night and nap today. Hopefully she'll keep it up and we won't have to turn it back into a crib! ha!! As for the moment- she ALWAYS wants to be up there.. she asked at 6:35 p.m. to go night-night.. hahaha

PS - some days .. she eats like a pig!! haha she is definitely growing as SOME of 2T clothes are quite tight.. :) I think the surgery was a success !! :) ha pray she never has to have another tho!!

Summers End

2011-08-29T20:08:00.000-04:00

Kayla and Lily have had a great summer. In all of the negative the summer has brought Jer and I (job wise) we have also had an amazing summer being able to spend most of the days with the girls! We have been able to go camping (thanks to the Alberns), to the playground, the beach, and hopefully soon we'll visit the D'Angelo's again as we missed them while they were camping.. But it's been a wonderful summer! We have some great new neighbors who are very nice and share their veggies (thanks :) ha) and Kayla and Lily LOVE their children.. Kayla calls them her "buddies"... I think it's because she really doesn't know their names.. she never settles long enough for me to teach them to her! ha

Kayla has had two fevers recently that are just so random.. I can't figure them out... she is very hot to the touch, and sometimes very lethargic... but always still wants to play, no vomit, just a fever.. and it lasts about a day or two.. it's so strange. I've thought maybe her two year molars are coming.. but idk.. it worries me as fever is also a sign of reherniation.. yes I'm back to being the freak who will ALWAYS worry about reherniation.. I finally got out of that stage, and then we found out she reherniated.. soooooo my worry side is back.. :(

Here are some pics of the end of the summer.. :)

a very rare moment - Kayla hugging Lily.. <3

Kayla's "big girl bed"... she proved to us she was ready after these two nights on the floor. :) So soon we will get her toddler bed ready. :)

I'm Ok...tribute.. :)

2011-08-12T21:59:00.001-04:00

For those of you who followed my blog on Kayla's surgery and recovery time you may have seen a video of Kayla letting you all know she was "ok". So today, I made her a t-shirt that says "I'm Ok". When I told her what the shirt said she knew exactly what it meant.. as she instantly lifted her shirt and looked at her scar. :)

We had a fun little photo shoot with her new shirt.. she's an amazing little girl. Sometimes it's so hard to explain just how life-threatening her defect is when she is so vibrant and giggly. But it's scary to think of how close we were to losing her.. :( And to think of all those who have lost your precious baby and those who still aren't sure if their little one will survive or not... makes me just so sad.. :( We are so thankful Kayla was able to beat CDH- and all of her surgeries. <3

Busy Summer (July)

2011-07-25T21:40:00.000-04:00

So far this summer has been very busy but more importantly very fun! :) I always enjoy having summers off but who knew they'd be even better once I had kids!! K's surgery wasn't too long ago, and she is completely recovered and doing great! She has a pretty dark scar.. but we put Mederma on it everyday now, so hopefully that will work.

Actually in this picture, her scar doesn't look so bad... but it's pretty dark..

We are having a blast in our backyard with our little pools....

We went to visit the D'Angelo's this month at Westcott Beach in Watertown.. it was a half way spot for both families. It wore everyone out I think... :) We had a great time and hope to do it again soon!

Then we had our family reunion with my side of the family, my siblings and their hubbys and their kids... K had a blast with her cousins! She loves every single one of them! Here she is drawing with Julian and Alyssa.

Swimming with cousin Alaina... she sees this pic and says "Alaina and Kayla swimming, where is Uncle Jamie?" ha it was cute! And that thing she is wearing- was AWESOME! It was her cousin Julians..and she swam by herself in the pool... !!

And we even had the best photographer come over and take pics of all the kids... this is one I took while also trying to keep my kids calm.. so it's not the best, but I tried. :) We got all the kids to sit so all the grown ups started cheering- Kayla FREAKED out and started crying! ugh! ha so I had to start singing... talk to her- and try to calm her down... she did well at calming down.. so it worked out! :)

Lily (11months), Kayla (2), Alaina (3), Alyssa (1), Jack (1), Julian (3), Jacob (5), and Maddy (2)

One Little Stitch

2011-07-07T21:30:00.000-04:00

Kayla is doing awesome! She has been more herself lately, if not a happier/crazier Kayla! She is amazingly strong! She runs around, jumps, pounces on everything, and is just so fun and loving.. I'm so happy she is back! She just has one little stitch, literally, that causes her issues from time to time. It's a stitch inside that holds the abdomen together that pokes out occasionally and irritates her. Sometimes it will get red and looks nasty- and you can feel it.. but Dr. said that was normal in little kids- in an adult, you wouldn't be able to feel it outside like we can with K. She gets over it pretty quickly though. She randomly rubs her belly and says "ow, belly hurt" but mostly she's pain free.

She is a little crazier than before- makes me a little nervous, but I just have to let her be a kid.. which is really hard for me! :( I don't ever want to see her go through another surgery, ever! So her pouncing and running into things on purpose scares the poop out of me!

Anyway- she's doing great! :) And at the moment I'm trying to become an anything photographer- so I have been experimenting with my camera bc of a class I am taking online.. so I have a TON of pics! :) Here are a few of my happy girl that poops mostly everyday, and no little balls either! :)

eating chocolate cake :)

such a cutie! <3

eating Cheetos :)

loves the water!! <3

Post Op Appt

2011-06-08T21:14:00.000-04:00

Today was Kayla's post-op appt... she had to have an x-ray and a follow up with her surgeon. The ride down was great, thanks to a good friend Danielle- who loaned her car DVD player which makes our trip a 1000x easier!!!!!! If you asked Kayla if she was ready to go get her picture taken, she was all for it- "let's go" but as soon as we stepped into the room where the "camera" was... she lost it, cried the entire time. She even told me to take off my special apron after the first two shots (we knew, the x-ray lady and I, that she would have to do it again bc K moved..) soo I couldn't take it off- she sat where she needed to sit and let us do it again, but she was crying the WHOLE time!!!! I felt awful for her!!

After her x-ray, I gave her a lollipop and she was totally fine. You'd never know anything was wrong w/ her! We strolled across the street to her surgeon's office and she played around the office while we waited... but then when they called her in... she lost it again. She was ok walking through the door to the rooms, but once the lady told us what room to go in to, she flipped out! But it was the really cute room with the flying pigs- so it was easy to calm her down. I just pointed out the flying pigs, and the cow...and she was good.

Her surgeon came in shortly after and Kayla, of course, didn't lift up her shirt to show off her belly. But when the Dr wanted to look, she let him help me take her shirt off. She sat there and let him look, but then he needed her to lay down- and that was not what she wanted to do... she had a lollipop in her hand, and was arching her back, throwing her legs up trying to get off the table- so Dr got all lollipopped but he got to feel her belly and he said all was well!

She is healing great, and only needs about two more weeks until she is completely back to normal. He asked if she had an older sibling- I said no, but some older cousins- and he said to just keep her from being pushed because it would probably be painful for her. He said her incision area is probably still very painful when pushed on... so we need to keep her safe from big falls, trips and pushing. :) Simple, we do that anyway! :)

So all was well!! :) A fun trip thanks to my mother coming with me as Jer could not bc of his job. It was a pleasant trip!!! Thanks mom!!

Day 17 Recovery!

2011-05-30T22:11:00.001-04:00

this weekend Kayla got to play with her cousin Maddy at Nina and Papa's house!! It's been 6 months since we have been there, she was excited!!

and play around the pool (can't go swimming yet, so daddy just dunked her legs in.. I was quite nervous with the stretch to her belly, but she seemed to love it)

Today is the 17th day of recovery... and she still has some issues. The tape has not completely fallen off yet and I think it's pulling her skin. She had some trouble before her nap today, tossing and turning, crying, so I went up to check on her, and she was so upset- she said something about the pillow and her boo boo hurting- I didn't catch much of what she said- she was crying to much. But I thought she was too uncomfortable when she tried to sleep on her tummy. But I don't really know? Maybe the tape was pulling her skin? Maybe her incision still hurts (which it really shouldn't)... It's just so hard to know. She sometimes says it hurts when I really don't think it does- every time we take her shirt off she throws a fit- doesn't want to be touched, doesn't want us to look at her tummy - we really have to convince her we aren't going to touch her boo boo or hurt her. :( It's really quite sad. :( I did convince her today to finally take off the chest tube "band-aid". But in order for it to come off, I had to tell her she could do it... and she did. But when we pulled it off, the scab came with it- EWWWWWWWWWW talk about vomit!! It was a big scab, and now it look like a hole in her side... I was quite worried it wasn't ok... Jer says its fine, but idk... it's gross.... but she seems fine. Her incision looks ok- and most of the tape has come off but she's still quite bothered by the ones that are there.

She also went to the Memorial Day Parade in Canton .. we met Mema and Deda there.. she had a great time!

yay! I got a flag!! :)

She is doing great though. She plays like normal, she's starting to get more energy and be able to do more. She still isn't running like usual, or spinning around- but yells at Lily and throws a fit when Lily touches her-so that's pretty normal.. :)

We even went to Mema and Deda's house for a bbq this weekend...and she is eating more it seems.. maybe it's because I'm watching how much she eats so she doesn't puke, but it seems she wants to eat non-stop. She eats a TON of applejacks, LOVES her muffins, and here she is eating dried fruit... Loves the Gerber style! :) She also devours her toast, and hot dogs.

She isn't 100% but she's getting there. June 8 is her post-op appt. Another x-ray and check up - hoping she doesn't freak out ... bc she freaks out at home just looking at her tummy- so not really looking forward to this appt.

To spoil or not to spoil- ugh!

2011-05-26T22:31:00.000-04:00

'cute face'

So tonight was hard on Jer and I. Kayla obviously didn't want to go 'night night' .. which is a normal thing... but she eventually comes to terms with it, and picks up Dolly and asks "carry me". But tonight, she wanted to carry these stupid pretend CD's that go to her music toy.. and I said 'no'... HOW DARE I?!!? Ugh- she cried hysterically, and then of course started her gagging thing- meaning she was going to vomit... (see mary I remembered not to use the word puke hehe) And she did a little- but it was just saliva.. I think. But the only way to get her to stop and calm down was to give back her fake CD's..

She is getting pretty spoiled at the moment- she is still supposed to be considered in recovery- and her papers to go home say no strenuous activity- well isn't crying hysterically considered strenuous?? Don't you need that dang diaphragm for that? ugh.. it's so hard!! Don't get me wrong, she really is doing much better. She is way more herself- still not totally Kayla- haven't seen her run... or spin, or be completely crazy- and she doesn't like her shirt to come off.. or show off her belly! :( I'm trying to make her boo boo cool- but she's not having it.

We have no other choice, we must spoil the poo out of her to make sure she stays calm.. which is SOOOO hard... bc when she is totally fine, it's going to be that much harder!! On the plus side- I thought I was going to have to re-train her to go on the potty- but she has not regressed at all. She only wet several diapers one day at the hospital. Ever since, she has gone on the potty.. and she's pooped every day w/o Miralax.. it may be a once a week thing? We haven't figured it out yet- but we don't want her to get backed up again. :(

playing with Lily- We'd tell her to make Lily laugh- and all she had to do was look at Lily and Lily would bust out laughing.. it was sooo cute.. and of course Kayla thought she was the bomb diggity! :)

love and sleep

2011-05-25T22:13:00.000-04:00

"kiss"

"hug"

A loving Kayla- she has been great since we have been home- more like herself. She has her moments- I think she is scared to poop (maybe pushing hurts?) and I don't think she likes to cough. :( But she's doing great otherwise. She has had some difficulty sleeping- maybe she got used to the wake ups at the hospital and expects to be woken?? Or maybe she's dreaming about the surgery?? But she wakes up screaming and crying- last night Jer went in to rock her, and a couple hours later, I did too. I feel awful for her... hoping she sleeps a little better tonight. Nap times have been great for her- they too seemed to always be interrupted.. so hopefully it will calm down for her soon.

A SPECIAL THANKS....

2011-05-24T08:28:00.037-04:00

c'mon balloons

I want to thank everyone for continuing to pray for Kayla throughout her stay at the hospital. I never knew there were so many people who thought about my daughters well being and I truly appreciate it!! I could not have gotten through this w/o being able to blog and write about everything going on- it's like therapy for me, and it really meant a lot to know people were listening!! So thank you!!

Her scar- the top one is where the chest tube was.. she won't let me take the tape off.

Kayla - where is your boo-boo?

I would like give a special thanks to..

Mom and Dad for Lucky and the crazy special gift. And for coming to visit twice while we were down there.. It was nice for the company!!

Laurie and Jerry for everything- taking care of Lily while I was gone, the gifts for Kayla, and for coming down to visit so I could see Lily- I know you came to see Kayla, but I was totally in heaven when Lily was at the hospital- I missed her a TON!!

Aunt Gigi who has always been so supportive and someone I can always talk to...for the balloons at the exact moment she needed them, and for spreading CDH awareness all the time!!! <3 Also for the Dora suitcase ...that was awesome!! And of course for everything else you sent!!

Aunt Meghan, Uncle Matt for sending the awesome slippers that Kayla wore EVERY DAY while at the hospital!! And for the "color" toy- One of K's favorite!! And of course for everything else!!

Patty, Vince and Charlie D'Angelo for all the times you came to visit- which was a lot- for everything you have done for us while at the hospital- the trip out for medicine, the potty, food and drinks! Seriously- the food you brought- was pretty much my b-fast, lunch and dinner for the whole week...Kayla loved the visits with Charlie and I loved the visits w/ his parents! Thank you!!

Aunt Anne who sent Kayla some balloons at the exact moment she truly needed them and for her new monkey "curious george". Also for the wonderful card with the special surprise inside.

Marcia for the hospital gowns- Kayla was the talk of the hospital for her special gowns!! One nurse even asked if they could get some for the hospital- So I told them about Etsy- maybe they can get a discounted price. :) But Kayla loved them!! And they were sooooooooo very helpful!! And made me happy to see K happy in what she was wearing at least! :) Thank you!

Danielle and Banford Elementary for the wonderful donation towards my stay at the hospital- you have no idea how much that helped Banford- parking, eating, co-pay, etc.. really helped!! Thank you- and D thanks for being so caring ALL the time!! You are awesome!!

Mary for the DVD's - Leapfrog was by far the favorite!!

Aunt Amanda, Uncle Dan, Jacob, Shaylee, Robin and Ed for the beautiful flowers that put cheer in our room and the Dora balloon that made K very happy. We even played with it walking up and down the halls- banging it ... quite fun! ha! Also for the cute get well bear!! <3

Aunt Terry, Uncle Larry Sr, Uncle Larry Jr, Becky and Maddy for the wonderful card and the surprise inside- K loved the stickers Maddy, especially the pig one!! <3 And Aunt Terry for the awesome gowns you made!! K was wearing the Dora one, so she got a new Dora pillow case from the hospital! ha

Aunt Ellen for always posting about Kayla to spread awareness about CDH and for the prayers we got from her posting about Kayla!

Missy Lawrence Peabody for the crayons (which K LOVED) and the other gifts that came in handy from time to time! Also for the balloon thought- :) Sorry I screwed it up for you-!

Courtney and Dave for the get well cookies- unfortunately she can't eat them, but they are adorable!! :) <3

we are now home- and only one pukage so far- (tonight) but it was minor compared to all the others at the hospital. She's been doing great at home...

the dot on her back (near the bottom) is where her epidural was...can ya tell she's skinnnnnny?!

and home to LILY!! <3

But we...

2011-05-24T07:48:00.000-04:00

still got to go home!!! Yay!!! Dr said to keep her on small meals, keep away from fatty foods... problem is K doesn't like much else.. :) But we'll do it just to keep her from barfing!!!

So here's what we think triggered her barf the night before-

she shoveled it in!! didn't eat it all, but more than K usually eats on a healthy day!

We did have a great last day though....

snuggled with "curious george"

played with Charlie- she LOVES Charlie!! <3

and Charlie LOVES her too!! <3

And then we....

2011-05-22T21:07:00.002-04:00

PUKED- EVERYWHERE!!!!! UGH UGH UGH! I can't even begin to describe what I am feeling at this moment... Going from such a high bc we thought we were able to go home tomorrow to such a low bc now we may not. UGH UGH UGH!!

So we....

2011-05-22T16:44:00.000-04:00

drank some Miralax and then

ate...

walked around...

colored....

played music (after walking upstairs)....

rocked in a rocking chair....

pulled the rocking chair....

And then we....

POOPED!!!!!! YAY!!! She pooped a big log and then a bunch of other yuckies... but poop w/ nothing making her poop!! (miralax just softens) I'm so excited! I bet we'll go home tomorrow-- I hope!!! :)

she looks unhappy at the moment- but it was bc she was done and didn't want to sit any more.. but I had to capture the moment!! :)

Fake poops..

2011-05-22T11:14:00.000-04:00

This was last night- she was full of energy- so we let her stay up a bit later. This was as close to the outside as she could get- sitting in the window...playing w/ mom's crystal light. :)

HOWEVER....

We will not be going home today- :( We are fake pooping again today!! She is getting Miralax in her juice and another suppository! Ugh!!

She is allowed to eat again....hope that doesn't go bad again.

rice krispies

no poop yet...

2011-05-21T18:58:00.001-04:00

I would first like to thank a few people who have sent us some things in the past few days. I heard from my husband last night that Aunt Anne and Uncle Sam sent us a card at home with a little something special inside. We also got a card from Aunt Terry, Uncle Larry, Uncle Little Larry, Becky and MADDY for the wonderful card and surprise inside. I would also like to thank everyone for the prayers and words of encouragement!

Shortly after the morning (early morning) wake up! Kayla just wanted up- but we did not. It was a rough night w/ Kayla crying a lot, and then waking up at 3 a.m. and wanting milk- yea right kid, go back to sleep. We got her to sleep til 5:30. UGH so they took a nap together <3

Kayla was aloud to eat today. She got some scrambled eggs this morning and some....

TOAST! She was devouring the toast! It was so cute to see!!

but then everything was ruined because they decided to take off the chest tube site tape- and thought it would be best to give her tylenol with a little narcotic in it. I think it hurt her tummy, but ate more toast after, and maybe that settled her tummy a bit? Because this was her for the next hour- loopy!!!!

LOOPY!! (this is "cute face") Yikes! And after this she was saying "Charlie hit you" (you and me- meaning Kayla) and then she'd whine a bit, so I told her to tell him to stop it. She goes "Stop it Charlie, stop hitting Charlie, Stop it!" It was soo cute! We have no idea where it came from. Then she said "oooh Charlie is crying".. we asked her why but she never told us. It was weird!! Cute, but weird!

Anyway- the news is this- she was allowed to eat until about 1:30 p.m.... which is when she puked a TON!! And I mean a TON!! It was gross!! Poor girl!! :( Her tummy hurt big time!! Our problem is- was she puking because of the food (which I don't think she was) or was she puking because of the narcotic? I know the narcotic hurt her after she got it... but she settled and then go the tape removed - which was painful for her- it was stuck right to her sensitive skin! :( So the narcotic did not mellow her out like they had hoped.. she puked a very little and then took a semi good nap. But after the nap- she ate a few bites of sandwich- but really wasn't wanting food- and then she flipped out- her tummy was hurting- so much so that she actually told me!! She barfed big time! So they took away her right to eat- and put her back to clear liquids and milk. UGH!!

then LILY came to see me!! <3 YAY!! Thanks Laurie and Jerry- I know you really came to see Kayla, but you were my key to see Lily!! And I MISS her!! Oh my!!!

and Lily loved the play room- and K's balloons! :)

we went walking as that helps the bowels get moving-

We got to the play room- it was closed. :( She was not happy!

This is not bc the play room was closed, this was because Mommy would not let her walk into someone else's room! ugh!

After the days events, Kayla was asking for some yogurt. So we asked her nurse- who called ped. surgery right away, and they said it was ok. So we let her have a little bit at a time- it did not bother her. She has asked for toast, and dried apples since. But we have not given anything other than the yogurt.

She must poop before we are allowed to go home. No poop today! :(

I'm OK.. Day 7!

2011-05-20T21:24:00.001-04:00

thought this was cute- just to let everyone really know how she is doing... :)

A much better day- a very minor whine this morning after some milk and a very small puke after the whine.. a little nap and all was good. :) She got to eat some ice cream today and drank milk a ton better today. She can drink about 4 oz of milk w/ no pain which is awesome. She did drink some chicken broth- she was not a fan.. but drank some. We tried pediasure but she said "icky" and made a face and gave it back. She did like the ice cream. She had ice cream at 9 a.m.... I told her that won't happen very often and to enjoy! And she did!! :) Then she had some ice cream later in the day from Tim Hortons... she didn't eat too much, but that's bc she wanted to walk around so much!

eating ice cream ... she got it everywhere!! But she was happy- watching Curious George and eating ice cream!! So I was happy!! :)

She had another suppository this morning- wanted to poop in the potty- and there were about 5 or 6 tear drop poops.. no sludge! So that was good... except the poop coming out required a suppository..

That red thing in her hand is a lady bug clip for the nurse to clip on her name tag. Kayla has seen them a couple of times. This nurse has noticed she is particularly found of it, and offered it to Kayla when she came in w/ two meds and the suppository. K took both meds and supp. easily bc she was holding the ladybug. The nurse let her keep it. Aww thanks Nurse Dawn!! (ps- K was holding it when the suppository did it's job and she dropped it in the potty...yikes!! luckily mommy got it before it touched any poo...ladybug floats! ha!)

Dr. came by tonight- our surgeon is gone for the weekend for some conference so the one left was busy all day- We didn't get to see him until about 8 tonight. Which is fine really- I really want to start K on more foods, and they will see how she does tonight and first thing in the a.m. before they start her on anything more. They really want to take it slow.. Hopefully she'll do ok- she didn't drink much milk tonight, but did fine throughout the day with it.

I told Dr. I wasn't comfortable taking her home if she wasn't pooping or eating on her own- and he agreed. So we will not be home tomorrow as I would have liked.. but I'd prefer her to be perfect before we go. I don't even know if we'll be home Sunday.. :/ ugh!

I can't complain too much though, she had a great day! Charlie and Patty came to visit again this morning/afternoon. Kayla just LOVES to watch Charlie... he's crazy! I love it! He's full of energy- I think K wishes she was. But they had fun today as K and C both passed out after they left.

aren't they the cutest!! <3

Oh yea, and Daddy came back today! <3 We were both very happy to see him!! Now it's just Lily I can't wait to see! :(

Day Forever-

2011-05-19T22:02:00.000-04:00

Last night- this shot was mainly for Nina- she loves the socks! <3

This was the pic pretty much posted last night- but a much better shot. She was soo cute!

Well we are finally to a point where they are letting her put some food into her- popsicles, jello, and at night they let her have some milk.

since the IV's are out (the pic..hands- free!) she has to have fluids by mouth!

so she was given a choice of what color popsicle she wanted, and she chose orange. I think she liked it, but it got so heavy that she got angry and didn't want anything to do with it any more after like 20 licks!

She had an overall good day. Morning- she did not wake up crying after her nap which is a first. She had some pain this a.m. I think- so I asked for her to get some tyelnol- it must have worked bc she calmed down a bit later. Patty and Charlie came to see Kayla this afternoon. They got to play in the playroom for a bit. Charlie had a blast! :) Kayla enjoyed herself, but was quiet. Then there was this Zoo To You or something- so we went to check it out. I love the zoo! But this was not the zoo part I love! They did too much talking for the kids that were there- and not fun animals. But love that they do that type of program. K was actually ok once it started- simply bc she was tired. She got to see a salamander (i think) and a very ugly snake. She was just too tired to stay. Charlie had to leave after the salamander bc Patty had to go. He was not happy.

some time in the mix of the day, Kayla got a gift. Aunt Amanda, Uncle Dan, Shaylee and Jacob and Robin and Ed (Amanda's parents) got K some flowers (beautiful flowers), a cute, soft teddy bear and a Dora balloon. Can you guess which one she wanted... ha!

and this was laugh because of their gift!! She was being silly with the balloon!! Thank you guys!! You rock!! <3

But they came back later when Vince was out of work and hung out for a while. They got here just a little after Kayla had her first drink of milk in 5 days- She was so excited for the milk too! She drank one oz and then screamed at me even if she saw the sippy cup.. :( I knew her tummy was hurting- she took a small nap and was still in pain. The D'Angelo's got here and K was miserable!! I was miserable!! :( Sorry guys! But K got tons happier after she vomited! She threw up clear stuff w/ small white chunks-all over mommy! Yup the milk did not agree. :( Vince and Patty were a huge help with this too!! (thanks guys) And she was much better after. We all went for a walk/wagon ride. It was fun- well for me anyway- not sure Vince and Patty would agree.. ha but it was fun! K LOVED watching Charlie- in fact she loved it so much she started to run like he was- YIKES the kid can barely walk sturdy.. But she had a great time watching Charlie!! So thanks guys for coming and cheering up K! Made my night a bit better!! :)

right before V, P and C got here- I can even tell by the way she is sleeping that she is in pain. :( (this was after her first oz of milk)

Not sure why some are yellowish- but oh well- the looks on K and C's faces are great!

After they left, K drank her milk- well actually they were still here, and Charlie was not happy she got milk and he didn't! :) Sorry Charlie.. :( But she drank 2 oz and so far has kept it down.. she is sleeping now, so i'm hoping by her inactivity that she'll be able to keep it down, but we'll see.

I just get so impatient- I feel like if she doesn't eat, or keep down what she drank that we'll be here FOREVER!! :( And I just want to go home, have K be able to recover there, be able to see LILY!, my husband, and my bed! I miss Lily so stinkin much- and when we get to skype, Kayla gets angry when I pay attention to her- so it's a bad situation overall! I did get to see Lily wave tho! OMG soooo cute!! Dr. said maybe we'll be here all weekend, but maybe, depending on how K does with poop out and food in, we could be out of here by Saturday. So we'll see.

Day 6 continued tube/wire/cord free!!!! :)

2011-05-18T22:11:00.000-04:00

So the past like two hours Kayla's stinkin IV stand thingy has gone off and beeped a cazillion times.. and each time it said it was bc of K- not the nurses, the IV stand, and it was.. and there was a kink in the IV wire- in a place they couldn't un-kink it. So they were just going to switch hands (she has one in both hands) but when they tried to flush it ... nothing happened...she couldn't get it through. So the nurses went and called ped surgery and they said she didn't need them any more. The nurses were sweet and asked me what I thought they should do- either do it tonight, or wait til morning.. I did not want to wait- the ones she had looked painful.. so I told them to yank them out now (which is what they preferred to do) It was quick and easy and now K is tube/wire/cord free!! I just hope she can still get pain meds somehow just incase... :)

Day 6

2011-05-18T20:02:00.000-04:00

Notice anything different??

That's right- Kayla got her stinking NG tube out today!! YAY!! Doesn't she look 10x more comfortable than before? The Dr. came in this a.m. and said they'd start a trial- 2 hours off NG, 2 hours on NG. After her first 2 hours off- she took a nap. She was exhausted from almost no sleep last night to getting to go for a wagon ride and playing in the play room today- so we came back for a nap- and then it was time to hook her back up- Dr. came back, said that she's doing great- and ordered it out for when she woke. Except he only told me that- and I don't count... he wrote on a note "probably".. he needed to talk to K's nurse- but she was on lunch break- but thankfully her nurse went to find a resident of Drs. and told them to let her know- thanks nurse Maura!! :)

Kayla has gotten 4 things taken out of her in the past three days. She started with the chest tube, then the epidural, then came the foley and now the NG!! WAHOO!! She only has the IV's in for nutritional purposes.. keep her glucose up- that sort of thing.

She was also allowed to drink some juice today. OMG she was SOOOOOO excited- she saw it and went to town, but she wasn't supposed- so I had to make her slow down. Thankfully Nina and Papa came to visit and helped K sip slowly.

Nina and Papa came today and got to pull K on a wagon ride and experience all the fun that can be.. ha! But I'll tell you it's a lot easier with help! K's wagon ride in the morning was just me- pulling the IV stand thing and the wagon- and I was walking backwards to insure that the IV lines didn't get caught and pull out of K's hand. It was interesting- I took her up the 12th floor to see the fish tank.. and when we got back down to the the 11th floor I took a different elevator- and there must have been a convention going on- bc there were a TON of ppl- me in my sweats, sweatshirt, no bra, and sock feet.. pulling little K and the IV stand.. it was interesting!! But Nina and Papa had no trouble. She was awake mostly for their visit- and got her NG out while they were here- surprised they didn't want to watch.. ha!

K taking a nap before Nina and Papa got there...

the nurses on this floor are adamant on putting up the railings- so I made sure I did before I went to shower. :)

K has also gone to the potty a couple of time- where there was poopy!! Yes she needed help, that med she got yesterday- but she's gone poo twice today, and once yesterday- and it's not a poo you and I would have- unless there was something not settling right inside of us... yup you got it- it sounds like pee, so when she gets up and it's brown, it's a little surprise for me! HA! But I guess the Drs... think that she is just leaking around the hard poo and the soup poo isn't enough... so they gave her a suppository tonight. :( I know it could be worse- it could be needing another NG tube, or more surgery, so a suppository is the easiest thing to try right now. Just, her poor bum...too much in the past few days- several tylenols in the bum, an enemea, soup poo can sometimes burn, and now a suppository...and she just cried and squirmed..:( but pray it works!!! please!

Aside from what we think are poop cramps pain she was pretty good today- happy to get out of bed and happy to Nina and Papa. Hopefully she'll get some sleep tonight and eat tomorrow. Pray for the poop and food tomorrow. Tonight she woke up from one of her many naps- crying, hysterically, "Mommy? Mommy? Muffins? Mommy, muffin?" :( She must have been dreaming about muffins.. poor girl. Later we were laying down on the bed looking at the balloons she got from Great Aunt Anne and Aunt Gigi - as she has them all floating on the ceiling and she looks at me and says "mom, sandwich please" "no, don't have sandwich... sandwich.." :( So hoping all poops out of her, and food into her tomorrow.

These are pics from yesterday before the move down to the 11th floor that I didn't get to post...bc I was too impatient to wait for them to upload...

she doesn't look happy- but I swear it's bc I got the camera out- she was having a great time with her balloons

chillin' w/ crayons

...... when Charlie, Patty and Vince came to visit. :)

The move! Recovery Day 5

2011-05-17T21:44:00.000-04:00

We got to skype with Daddy last night- and aside from videos my parents-in-law have been sending me that was the first time I got to see Lily- she seemed soo excited.. not sure if it was me or that Daddy was home or that Mema was holding her but I am going to take it as she was super excited to see me! :) I miss Lily like crazy!!

Last night was a little rough- K was sleeping find but some nights she has been fine with the nurse to come in and not been disturbed too much, but last night she woke up every time, and was not happy - could have been the fact that her epidural was less- but idk? It was just an off night for her- then an early morning- again she woke up when her nurse came in.. and she was quiet so I don't know?

So as soon as she woke, she wanted up- so we put her in the chair again... about half hour goes by and the pain Dr was there to take out the epidural.. of course she did not want anyone touching her- so she wasn't happy. There was a TON of tape on her back...so it took them a few min to get the corners up- once they did they ripped it right off (not harsh tape) and the epidural came right out, looked easy peasy but K was not havin it. After that she was quite tired. So she napped for a while.

Then her surgeon Dr. came up and asked about her- told us she could have the foley out (the pee pee line)...so they took that out right away. I let her be bare bottom for a while as she was having a tough time dealing with all that was going on... and not too long after the foley came out- she asked to go pee pee. So the nurse came in to help, and we got her on the potty (thanks to PATTY who brought us one so we didn't have to hold K over potty, phew!) and then K starts crying- and says "go to sleep" meaning she wants to go back to the bed... so I told her if she didn't pee pee, I'd have to put a diaper on... and she went at like that exact moment- so the nurse and I are thinking she peed... since we heard the tinkle tinkle in the toilet- and I usually let K wipe herself, but I do it afterwards- but when I do I go from front all the way to the back- and that's when we saw there was some poopy on the wipe.. we were confused- but when we looked into the potty you could see it looked like diarrhea...guess it was still a little bit of enema left in her- and some poop came out too.. poor kid. :(

After the potty time- we were told we were leaving the PICU!!! We are now down on the 11th floor!!

K has been pretty miserable -- can't blame her but.. OH MAN!!!! It's soo stressful- poor girl just isn't old enough to tell me really how to help her. :( She's obviously getting better- wanting to do more, eat more, drink more- which she can't do any of... which makes it harder... ugh!! I did let her walk from the potty to the bed- every time she got up to go. When we were still in the PICU, she walked like a little old lady- teeny tiny steps, it was so cute. I mean she hasn't moved since Friday morning... so she's a little weak- and the epidural..I can imagine had some effect on her. But by the third time going to the potty on the 11th floor she was walking a little better- bigger steps, almost standing on her own.. however- I thought I was going to have to retrain her to go to potty on the potty- not retrain to walk...ha! :)

The only extra meds she has been given are her pain med- tortacal ?? I don't know if that's how you spell, or even if the ending part is right- ha but that's for pain, and then they started giving her an anti-acid bc her NG tube was showing bright red stuff- after a while of it not showing much of anything- and it cleared right up- and then they gave her some malox...she was not a fan- I guess she felt it (they think she was refluxing when given it, and you could see it come out the nostril that doesn't have the tube. She has morphine as an "as needed" back up drug- and today she needed it. She was impossible. She acted like she was ok when in bed, but cried every time she had to go potty- and wouldn't let me put a diaper on, she slept most of the day- I was just sooo worried-

One time she went to the potty and she was MISERABLE - her eyes look sunken in, purple, she looked famished... I was devastated. I was frustrated. I was a mess! Before we got back to the bed, the nurse asked K if she wanted to go for a walk- I was shocked! For sure K would want to- she cried NO and said "go back to sleep" then the nurse asked if she wanted to go for a wagon ride and again K cried "No, go back to sleep"....:( We got her back to the bed, and the nurse left. Kayla wouldn't let me put a diaper on her, kept saying no to pain, I just lost it. I cried and cried- it was an awful day. I tried to keep it together- I didn't want the poor nurses to see me completely insane.. but I was just too stressed- too worried- and helpless. Kayla was obviously hurting, and I just didn't want to see it I guess... they offered the morphine- and they asked what I thought- couldn't even spit out an answer before the tears came flowing again.. all I thought was this would back up her poo, making us stay longer, and the NG stay in longer, and make her sleep more when she had already slept most of the day... but she was amazing after! We laid in bed together, read a few books. She wanted her balloons- and when she got them, she'd say "oh no" and let them go.

She then wanted a wagon ride, and we got to go to the play room, and play! She farted twice while there too!! Then she looked as tho she would pass out- but she didn't. We got to talk to Nina and Papa, Daddy and Mema, and then Vince, Patty, and Charlie came to visit. It was a good night! Much better than our day!! And she is still awake right now- ha!! Talking like crazy!! I'm so relieved.. now just to get that dumb NG out!!

I can post pics tomorrow- I do not have the patience for the uploader right now... ugh!! Sorry...

ICU recovery - day 4

2011-05-16T19:24:00.000-04:00

Last night was great! Kayla slept all night- except for when the nurse came in. She slept till around 8ish.. She did go to bed later than usual tho. I slept with her- at the end of the bed so I wouldn't crush a cord while sleeping. Not the comfiest spot but the only spot I can sleep. So I got a lot more sleep last night than I have in the past two.

Before bed, I let her sit in the chair alone bc she's kinda sick of the bed. She loved it. While talking to a Dr. she asked me for a kit kat...ummm, no babe sorry..! :( A little bit later, she asked me for cocoa puffs, and then not to long after that she asked for ice cream. Ugh- I'm so sorry baby!! :(

This morning was kinda rough on Kayla tho. She started out wanting to "get up"... So I let her sit in the chair all alone, but really that's not what she had in mind. But it did keep her happy for a while. She then asked to "go for walk".. :( So sorry baby!! :( She broke my heart this morning.. and it only got worse- in a matter of an hour Kayla had...

- her chest tube taken out- which was supposed to be fast, but ended up not being fast bc the pain lady had to cut stitches around the tube first and that took some time. Then, she was able to rip it right out. Kayla cried the entire time. I felt awful! :(
-nurses decided while she was already upset, might as well retape her NG tube...she was NOT happy.
- as soon as K fell asleep, the x-ray guy came. They have to take an x-ray of her right after chest tube is out just in case air got into the chest...if air got into the chest they'd have to put another tube in...her x-ray was fine.
- just as K fell asleep again, the nurse came in to give her her pain meds... one thru IV the other is in the bum...K again, was not too thrilled.
And then it was time to do vitals- again, but K didn't really wake up. Phew!

right after the chest tube was taken out- she was soo upset :(

worn out from all the fighting she did.. :(

Missy got her some crayons for her stay at the hospital and I let her have some today- she has had them all day- still does at the very moment- just holding them. And during the chest tube episode she couldn't have the box bc it was too big and getting in the way- so as she was crying I asked if she wanted a purple crayon- "no!" ok... so I asked if she wanted a orange crayon ... "no!"ok...so I asked if she wanted a blue crayon "yea, ok!" all while she is crying hysterically! <3 Thanks Missy!! She LOVES crayons! :)

So K got a good nap in and then it was time for the enema... ugh! Yes K had to get one bc the Dr said she was so constipated, had a lot of hard poop, and having the large intestine out for so long, it shuts down, so they are hoping that the enema will help to release the poo, which will hopefully put less out of her NG tube and the less stuff that comes out of that, the sooner she gets the tube out. And yes- the enema helped to release some poo- she freaked out the second the nurses left. She arched her back, started crying, screaming, turned her whole body in the bed.. and with all those dang tubes/lines it was a mess! She kept saying potty- I told her to just go in her diaper.. but she was not havin that... and I forgot her potty in the car- which I don't have here any more. So my nurses saw me struggling w/ K and came in to help- they said it was fine to get her to the potty- took a couple of min to get all the tubes/lines ready to go over to the potty- all while K is FREAKING out.. so we get her over there- and of course K is this tiny little thing and would fall into the potty in a second, so three of us are holding her.. two got the upper body, and me on my knees holding her legs down... she was flipping out! I bet it was painful. :( She was stiffening her body- screaming - oh man it was awful- finally I told her to push- and made the grunt noise w/ her- and she did- and got a couple of poopies out- which is great! But she was exhausted, rested her forehead on mine, and started to fall alseep.. :( I asked her if she was done, and she said no- but she was falling asleep.. and my knees were broken and I bet the nurses backs were broken. So we got her back into bed, and she passed right now- worn right out! I was soooo heart broken to see her go through that... Oh man.. it was awful!!

as soon as we got her back into bed after the poop incident on the potty- she got a little surprise. Her Aunt Gigi and her Great Aunt Anne sent her some balloons. And K in a freaked out stage still says "Kayla want balloon, Kayla want it"... and her bed was a mess- a mess of tubes and lines- but she had a death grip on the balloons- so they had to untangle with her holding them.. ha She LOVED them!! Perfect timing Aunt Gigi and Aunt Anne!! <3

What do you think she's saying to mommy with those eyes??? hahaha- and if you look closely- you can see some of the incision makr- the big tape is where her chest tube was-

After the enema, they turned down her epidural- less pain med... and by 4 a.m. it will be completely off, will have morphine ready for her if pain does exist, and by the time Dr. comes tomorrow, the foley and edpidural may be ordered out and we'll be out of the ICU! We'll be on the regular floor. :) I did ask her surgeon if she needed the tylenol- the one that goes in the bum- bc I felt her bum had suffered enough- and he said he wasn't sure why she was getting it anyway- so phew, no more things going up her bum! I mean today she had two things go up - tylenol and the enema- and both she said "owwww" :( And after the pooping episode I'm not sure I was going to let anything in there anyway...

this was tonight- she wanted the circle balloons- while watching Curious George.

She is not a fan of mommy taking pictures at the moment- and if you have noticed- she doesn't have one of her cute hospital gowns on- I have just let her be since she's had a rough day- and I was afraid of a huge poop mess in the bed...but she wouldn't poop in bed!

Kayla had a TOUGH day!! From chest tube to pooping- it was A LOT for her. But all things that have to happen in order for her to get better... just SUCKS to see her in pain and uncomfortable like that. Today- she has asked me for peaches and ice cream. She asked to wash her hands too- which she can not do bc they are both covered with IV's!

Recovery- Day 3

2011-05-15T18:30:00.000-04:00

I would first like to thank everyone for all your support, help and prayers!! It has been a rough couple of weeks thinking of surgery, postponing surgery, to having surgery, to finding out at the end it was a major one... more major than the docs thought!! ugh! So your prayers and kind thoughts have really helped us get through this tough time. We honestly appreciate all of it!! Thank you so much!!

Last night was ok. I think Kayla slept fairly well, and Jerry and I got a better nights sleep- we traded off at 2 a.m. I got up, and he laid down. But now it's just me for the week- we'll see how that goes.

Another uneventful day- phew! Kayla seemed a little sad in the morning... but seemed to get better during the afternoon/evening.

In the morning, it was decided that by the pain people to stop the epidural... but only stop it, not take it out. They wanted to see how she would do w/o it... but once one of the Drs. that helped our surgeon during K's surgery came by she was not happy. So it was ordered to be put back... good reasoning as well. She said the longer time they have resting, the faster the healing will be. So the epidural was ordered back on with two other pain meds... I have only seen the other pain meds given once.. one was tylenol- and I don't remember what the other one was called, but all the different types were for something different- i don't know if that makes sense.. :) So she really only went w/o pain meds for about 2 hours, and I think it took that long for the epidural to really be out of her system anyway- but I think she did fine, but moved a ton more- so I totally see the reasoning the surgeon gave- it helps her to be still... we move her enough during the day to make her body still use muscles but she needs to rest.

Kayla is loving the sponges with water again- here she is watching Leapfrog (thanks Mary) and sucking on it.

Nina and Papa are coming home from MB this weekend, and it just so happened that we were here on their way home.. so they stopped in. Kayla, I know, was totally excited but still not herself yet. So she didn't show much emotion. But she LOVED that they showed up bc she hasn't seen them in six months. She fell asleep shortly after they arrived, she had just been given pain meds... and slept for two and a half hours. She woke up and said something- Jerry and I didn't quite catch it so Jer asked her "what did you say hunny?" and Kayla said "Nina...?" in her cutest whine voice ever- and so I told her that Nina and Papa had to go, and she started to cry. :( It was great to see you mom and dad!! <3

Vince, Charlie's daddy, came by to bring ME some pain meds.. and they WORKED- thanks Vince!!!! I feel a ton better! Anyway- Vince came up to give me some meds and the second Kayla saw him, she gave him the smallest but cutest smile! The first smile I have seen in two days!! I LOVED it!!

After our visit with Vince, Kayla got a sponge bath. She was ok with it bc I let her help clean herself with a wash cloth- I stopped just to get my wash cloth wet and warm again, and she says "mom do it again" :) She talked a bit during the sponge bath, and then as I went to put on one of her hospital gowns she said "no hospital".. :(

Then Jerry wanted to get going so he could make it home by dark, so I ran down to the cafeteria to get some dinner before he left. I came back and Kayla had one of those sponges that we put water on. She LOVES them! She kept asking for "more, over there." (there are two sinks in our room- "over there" is near the doors to leave, and "over here"- is in the "bathroom" area). Jerry said he got a couple huge smiles when he kept going to the sink she wanted. I got it for her a couple of times, and one time she told me to go "over here" and I said "okie dokie" and she said "okie dokie artichoke" :) After a nice good bye from Kayla - it was so cute.. she said goodbye daddy, I love you daddy, signed I love you.. just like it would be at home. We were worried she'd be really upset. But she may get that later on when she doesn't seem him for a couple of days. :(

after her sponge bath and after daddy left

Kayla JUST got some more meds and when she was given the suppository she didn't flinch or move, she just said "ouch" when the nurse was done...hahahaha it was sooo cute!!

so annoyed that she can't get up- :(

She seems better now with the three pain med combination- just hope it's ok when they start to take it away.

post-op day 2

2011-05-14T19:28:00.000-04:00

Thanks to the visit with Patty I can post the pics now.. :) Thanks Patty!

Some pics before surgery-

Jerry taking Kayla down to surgery- a very hard sight to watch! :( The blond lady was SUPER nice!

Last night wasn't too awful- I didn't get much sleep...but Kayla did. She slept for most of the night, waking up here and there, but falling back to sleep easily. She did have a fever last night, and since she is NPO (nothing by mouth) she couldn't take tylenol the normal way- she had to have it as a suppository. Yucky! But she didn't even flinch and she got two doses. The Dr. said that a fever is normal right now after surgery- I was a little worried but she has kicked the fever.

I "slept" in a very uncomfortable rocking chair.. for maybe a total of an hour in about 6 hours. So by 4 a.m. Jerry got up to go to the bathroom- and we switched. He was sleeping in a very uncomfortable pull out chair, but way better than the rocking chair. So I got about 3 hours of sleep... not bad.

Jerry got to snuggle her today- the Drs. wanted her up and moving a little today so they said one of us could hold her. I think Jer feels like she's angry with him for taking her down to the surgery- but last night he said I love you to her and she signed it back to him... it was ADORABLE! So she's fine! :)

Today has been pretty uneventful.. phew! We have slept on and off.. Kayla has too. She was awake for about an episode and a half of Mickey Mouse today- longest she's been awake since.. she's pretty sad though. The nurse thinks it my be bc of the epidural- making her feel weird- she doesn't move much- and when awake seems so sad..:( She doesn't seem to be in pain... and she does say no when you ask if something hurts... and she is one to want a kiss for something she has hurt.

Patty (Charlie's mom) came to visit today- Charlie can't come yet- not until Kayla is out of the ICU. I can't even see Lily til Kayla is out of the ICU.. which pretty much means no Lily til Kayla is home.. :( Anyway- Patty came over for a bit, it was nice to have someone to talk to - Jer and I have either been sleeping (taking turns) or trying to make Kayla happy. So thanks Patty!! :)

Now, when I say Kayla is sad- it's not that she is crying, she just has a whimper to her- mainly bc she doesn't want to cough up the gunk..:( Speaking of the gunk- she had issues w/ her NG tube today. It was making her gag, so our nurse waited and waited for someone to come look at it, but finally I think, felt so bad for Kayla that she just decided to try to fix it... so she took the tape off of Kayla's face and pulled the tube out a little, Kayla instantly puked brown yucky stuff- and gagged and gagged for quite some time- and then we saw it come out of her mouth in a loop- which is how it was down in her- no wonder she was gagging. So they took it right out. They gave her some more pain drugs and put another one in. She took it like a champ.

The only other issue we have had today was not too long ago- Kayla wanted to sleep in Daddy's lap again (this time she said she wanted to, the first time we made her)- well she woke up- slightly- and said "no" in her little whimper voice, and Jer was fast asleep. I was sitting across the room and said "Jer-" in a pretty normal voice, a voice where someone that close would hear me... well Jer didn't and I said it like 3 more times, getting louder, K woke up completely and so I yelled Jer- but not like a complete crazy yell... well Kayla started shaking like crazy- and looked completely scared..:( I don't know if it was bc of my yelling or if she was shaking bc of her epidural or if she looked scared bc she was sitting up at that point... and she's not into the whole sitting up thing yet- so that was scary!! I almost had a heart attack!

She is ok- just sad. Which makes me sad. Which makes Jer sad It's tough.. we expect to be in the ICU for another couple days.

first time we got to see her! that was hard!!

her recovery room

first night in ICU- LOVED the sponges with water on it... tonight tho- not so much..:(

Jerry holding K- she did not want to move... but nurse said she needed to move around a bit today

watching Mickey Mouse

this is when I had to yell for Jer to wake up- I was scared he'd drop her...

pre- and post-op

2011-05-13T17:46:00.000-04:00

After a 3 hour drive, we arrived in Syracuse. We got there just in time for her first pre-op appt with her surgeon. She was miserable! I blame it on a long drive, and she had just woken up from a short nap... going to see the Dr was the last thing she wanted to do. After that appt we had to go over to a different part of the hospital for a mtg with the anesthesiologist. She was just as lively as can be at this appt. That one took forever! And it wasn't even the last one! After that mtg we had to go get a chest x-ray- which I did not think of, so was not prepared. She did AMAZING for the x-ray- sat on the big girl table with no tears... but apparently twitched to much just as he took the picture. So they had to do two more pictures using the one that looks like she's sitting on a bicycle seat.. she did fine until the second picture- she looked up at daddy- as she is closed in by a plastic wall all around her, arms up - and says - "daddy, come here" - which is her way of saying pick me up. Jerry almost melted right there!

So after about 4 hours of being at the hospital for different appts, we were free. We checked into the RMH house and then left to meet up with the D'Angelo's at the playground. Kayla had a great time! She loves the slide. After the playground, we went to dinner together. Kayla hardly ate while Charlie scarfed a ton of food... and sang loudly while he did it.. it was stinkin cute- I asked Kayla to sing too, and she did, but you could hardly here her, while Charlie was as loud as could be!! :) After some dinner, we went to get ice cream. Again, Kayla hardly ate while Charlie sat and ate his entire ice cream cone! Kayla wouldn't sit for two seconds! We got back to the RMH around 9:30, gave Kayla some milk by 10 and she passed out in bed with Jer and I. We didn't have the heart to put her in the crib.

First thing in the morning we went to the hospital and were greeted by some very wonderful nurses. We walked in and they all said hi and knew Kayla's name... they were just so nice! We put Kayla in one of her hand made hospital gowns and she ran around playing up until the time they brought her down to surgery. She LOVED the magnetic dry erase board easel. (that may have to be a post-op gift) :) Jerry had to take her down as our Dr. was more comfortable with that bc of my stinkin cold! He said she didn't cry until she had to lay down on the bed. As soon as she was down, they put her out. Jerry was back up with me in about 2 min!

Then we waited. And waited. And waited. A little after 3 hours the phone call was finally for us in the waiting area! The nurse working with our Dr. called us to let us know what was going on. She said that everything was going just fine and that they were closing her up. But then she said to expect about another hour and a half...WHAT?! We had no clue what was going on, and I actually anticipated it to be shorter than 3 hours... my bad! So - we waited. And waited. Finally we saw our Dr. walk in.. and he assured us she was doing fine. Then explained everything- it's quite a bit to take in really- you kinda feel lost, and feel a little stupid for asking questions when you know he's already answered that question. So here it is... it's a lot!

4.5 hour surgery- about an hour to get the catheter in, they gave her an epidural for pain, and to get the IV in. We don't know how many times they tried to get IV in, but we do see several poke holes. And then surgery was on. Once they got in this is what they found-

- she had reherniated..so all that we thought, was wrong, it wasn't bc of her growth or that the patch was loosening. she had def reherniated- the front was completely undone but the back part was still in tact.
- a portion of the large intestine had gone back up into her chest cavity... they saw that she was constipated (that I don't know how they knew)
- her spleen was stuck to something (we don't remember what but are thinking it was the patch) and they had to pull it off, and when they did it bled a little- and they put surgical glue on it and it was fine.
- they had to put stitches on her intestine (I say large, but Jer says small- we don't remember what he said) bc there were small abrasions on it.
- they took out her appendix- it was on the left side and foresaw problems in the future with that. (ie: if her appendix were to have issues- she'd complain of issues on the left side and no doctor would ever think that it could be her appendix bc it's supposed to be on the right side)
-they did not take out the old patch, just added a new one to it... Dr. said it was about a 2" x 3"(the new piece)

Right now she has an NG tube mainly bc of the constipation- I THINK. (to put stuff in it to flush out the poo?) She needs a little bit of oxygen- she is on about 30%- it's not a tube in her, just laying on her and blowing on her.. Dr. said he wouldn't be surprised if she needed that for a couple of days. She also has a chest tube - :( She comes in and out right now- out mostly but you can tell anesthesia is wearing off a bit...we have heard her say "i'm ok" and answered "ok" to a question... she has shook her head no- and yes when asked a question. She also had to be sat up a couple of times, and one time she saw stickers laying on the bed and she reached her arm up to get them, silly me thought she just wanted me... so I grabbed her hand to hold it and she weakly pushed me away- and kept reaching, I asked if she wanted stickers and she did. :) We are in the ICU at the moment- and may be for a couple days. Dr. said this was a MAJOR surgery.

**pics to come later- I forgot my camera cord to hook into the computer at home... :(

Another Postponement?

2011-05-11T20:25:00.000-04:00

I got a call this morning from Kayla's surgeon's office asking me if I could call them before we take off to Syracuse. The only thing I thought to ask was if Kayla's surgery was going to be postponed. All they could tell me is that they weren't sure. After that phone call I was stressed out of my mind and just felt sick to my stomach.

We have already postponed her surgery once because she was sick... but we waited until the day before we had to leave to know if it was postponed for sure. This time we are sitting here waiting to hear the day of travel. I have been stressing about her surgery ever since we found out about it. I know it needs to be done and stressing isn't any good, but I can't do anything else. But the past two nights, I have not really slept, and if I did sleep, I was dreaming about her surgery. I'm just so nervous, terrified, sad...

At the end of the work day, I couldn't take it any more and I called our Dr's nurse back. She is sooo very sweet and didn't seem bothered by me at all. She even gave me her personal number so I didn't have to call the office and get any random nurse. She listened to my concerns and told me she would call me back as soon as our Dr was done with his last patient. After an hour of waiting to hear back, I was just too crazy about the whole situation, and I called back. And I know that they are sooo super busy, and I felt awful for calling them back but I'm a nut case right now... :( The nurse still did not seem bothered and was very helpful! She got me right through to our Dr. The whole issue is that our Dr is having a biopsy done on his foot tonight and isn't sure he'll be able to perform surgery on Friday. He told me he'd have his nurse call me first thing in the morning to let me know if we should head down or not. And he knows that we really want him to do the surgery-

So with that huge long story you probably didn't care to read... we are not sure if we are going to Syracuse tomorrow or not. Our Dr did mention maybe having to postpone til Monday or Tuesday- could be Thursday or it could still be this Friday. We just aren't sure what's happening yet. Which is so hard! I just need her to have the surgery so I can stop thinking/stressing and stop being a nut case and help get her through the recovery.

However, this morning before the phone call, Danielle, a great friend, surprised me with a great gift that my co-workers in Banford contributed to. So very kind!!! So thank you Banford! Then a friend, Missy Lawrence, came into my room and gave me a gift to give to Kayla! Kayla won't get them until after her surgery as one of the gifts had stickers in it... she LOVES stickers. :) So thank you Missy! <3 You are too sweet!!

Even tho I think she is working harder to breathe, she can still run "so fast". She had a great time running back and forth saying "I so fast... so fast"

Friday the 13th

2011-05-03T22:00:00.000-04:00

Kayla is doing much better but not well enough for her surgery on Thursday. The surgeon's office read over our pediatricians notes on Kayla's last two visits, and decided it was best to postpone the surgery a week. She has been rescheduled for Friday, May 13. (I know.. Friday the 13th... UGH!) However, my husbands logic is this: Kayla... unlucky for having to have surgery AGAIN, Friday the 13th... unlucky day, two negatives equal a positive... so Kayla's surgery is going to go amazingly well and she will recover better and stronger than ever! :)

It will be hard to wait another week for surgery- the anticipation is killing me! I'm stressed about absolutely everything and anything! I stress about what to bring, my lesson plans, Kayla hating me when she wakes up, Kayla being disappointed that it's ME who is staying with her at the hospital (daddy has to work :( ), Kayla crying with the stitches (it's freaks me out), the pain she'll be in, her not wanting to sit still, bowel obstruction, reflux returning, Kayla getting even WORSE at eating (ugh), Lily forgetting who I am, money, I mean everything... it's been a stressful month, and another week has been added on. My co-workers, friends and family must hate me by now.. I've got to be the most annoying, grumpy person ever. I'm sorry ... :-/

Anyway- so for those who have been wondering, Kayla is doing much better. Just not well enough for such a procedure. I'm very thankful that they did not postpone longer than a week, and I'm also thankful it was postponed as now I have two days I get off from work w/o having to take them off. I'm already taking 11 days, 10 w/o pay... and then when I would be able to return, we have that friday and monday off. :) I am also thankful for the new date because her Nina and Papa can come visit now. But a little sad because that week would have been the recovery week...

Staying positive- and trying not to stress over it all, but it's been hard.

Ready for Surgery, Hopefully!

2011-04-28T22:16:00.000-04:00

Thanks to a great friend from work, Kayla has two very cute hospital gowns. This is one of them... it has snap shoulders and a tie back all the way down. It's perfect... she LOVES it!!! She also has some "dance shoes" slippers from her Aunt Meghan and Uncle Matt that matched this gown perfectly. She danced around for at least 10 min in this outfit.

Kayla's patch is pushing on her lung and making it harder for her to breathe. She isn't panting or anything like that, but our ped. said she could tell she was working harder... and at the very moment, to make things more complicated, she also has a cold... both of which are making it harder for her to breathe. If you've never met her/seen her, you'd never know.

Not only is this cold making her work harder to breathe, but it also may mean we need to postpone surgery. I REALLY do not want to, but I'd prefer she'd be 100% healthy before going under! However, after a doctor tells you that she's working harder to breathe... you want that fixed immediately whether they see it as an emergency or not. We are still praying that she recooperates before Wednesday of next week.

May 5th is the surgery date. We hope we can keep it... but we'll see. If we have to postpone, I'm hoping we can postpone a week, not several..!

We would like to thank all who have sent Kayla gifts... she has LOVED everything that has come in the mail and all will make her stay at the hospital much easier. We appreciate EVERYTHING and can not thank you enough for trying to make our girl a little happier there. We would also like to thank all who have prayed for Kayla! We appreciate your good thoughts towards her rough time. <3

Happy Easter

2011-04-26T22:14:00.000-04:00

loves her big red ball

a very rare moment... <3

loved the easter egg hunt in mema and deda's backyard

giving an egg to lily <3

<3 daddy and his girls

It was a nice day had by all...and a special thanks to uncle tim for making dinner!!

CDH SUCKS!

2011-04-08T21:54:00.000-04:00

The past few x-rays Kayla has had have been iffy- so our doctor wanted us to come back and have another done after she turned 2. Unfortunately this x-ray was even worse. Kayla will have surgery on May 5th. Her diaphragm is stretching to a point where the stitches are coming undone. She is growing, and the patch can't handle it. I guess it's safe to say I don't really understand what is happening, all I know is the Doctor said she needs to have surgery because if left untouched, she will reherniate.

I was in shock when he first told us... and I wish I had a picture to show you the x-rays. He showed us the one taken on Wednesday and the one prior to that about 6 months ago. Her patch side diaphragm has a massive curve to it. Her normal side has that natural curve to it, but the patch side, is looks like a sling shot thingy when you are about to shoot a rock or something at someone. That is what the curve or rounded tip I am talking about....Her one about 6 months ago was a whole rib below the one she just got. This patch is stretching at a crazy rate, I can only imagine how many stitches have come undone.. and when I mentioned the puking fiesta Kayla had several months back... the look on his face was the look of concern... he didn't say anything, so I am just speculating.. but I think this vomiting thing was related to this patch thing...

Anyway - Kayla's surgery will be on the 5th of May... 27 days away. I'm extremely stressed, depressed and overwhelmed. The thought of having to see Kayla with tubes and needles and drugs again frightens me and most certainly saddens me. She is going to have no clue what is going on, all it will look like is that Mommy is making her get all these painful things done to her for no reason as she feels and looks just fine.

I feel absolutely helpless... The only thing I can do to make myself feel "ok-ish" is to buy her things that I think will make her comfortable in the hospital. I plan to make her some hospital gowns- trust I'm not crafty enough to really make one, I'm just going to buy some cute nightgowns with Minnie Mouse or Dora on them, cut the back and have my mother in law sew the ribbons on for the closure in the back. I am going to buy her some slippers, and a bunch of other things she loves.

I honestly have no clue what to do. I don't know what to expect, and I certainly don't know how to keep a crazy girl calm so she won't rip stitches out on her tummy... So please CDH mommys and daddys if you have any ideas for me, please share them. I'm at a loss...And part of me feels like this is my fault.. this whole CDH crap.. and now my daughter has to undergo a third surgery.

I feel absolutely helpless :(

Happy 2nd Birthday!

2011-03-16T20:31:00.000-04:00

March 4th was Kayla's 2nd birthday!! Holy Guacamole!! On Friday night- we celebrated her birthday with Mema and Deda and on Saturday we invited more of Jerry's family over to celebrate with us. There were several kids there and Kayla didn't really play with them, but she played around them or watched them play. She isn't used to kids, and I really wish I knew how to get her there. I want her to be excited to play with other kids... I just don't know how. Anyway- she had a great time. She started opening her gifts... which she really isn't in to... I had to beg her to stay with me and dive into her gifts... she kept leaving though. She did get some great gifts from all the wonderful people at her party. However, her favorite gifts were the two bags of Cheetos!! Crazy girl!! She had a great time and I thank all who were able to come to her party!!

Her favorite part of both celebrations was when we sang happy birthday to her. She LOVES that song apparently. She watched a video (like 50x) of some kids singing it to one of my friends... and then she started singing it last night.. it was adorable!!

Kayla LOVES to sing and dance. She is obsessed with music. We now have to bring down her stereo every day for her to listen to her kid CD (another gift from her bday) ALL DAY LONG! She loves Wheels on the Bus, ABC song (which she can sing now), and Pop Goes the Weasle. Her favorite song to sing from a book she has is Rain Rain Go Away...if I beg she will sing the very beginning of Twinkle Twinkle, and of course added to the list of songs to sing, Kayla loves to sing Happy Birthday.. <3 When I go in her room to get her from a nap or in the morning she is always singing and when I walk in she says "take a nap" (her animals take a nap when she gets up- it was the only way I could get her to keep all of her animal friends in the crib instead of taking them all downstairs), and then she says "music"...She so cute! Sometimes she sings jibber jabber- adorable!- but most of the time she is singing Rain Rain..

She is now to a point where she does not want to go take a nap or go night night- she throws a fit every time.. and says no, no, no, no, no.. you get my drift. UGH! ha! She's cute tho... she'll say "snuggle mom" or "snuggle dad"... like that will keep her up a little later.. she's right- we love to snuggle! haha :) then she'll go grab a book and say "mom reread?"... i think she's trying to say Mom will you read...but it sounds like reread.. so cute! She loves Dr. Seuss and Curious George at the moment. :)

We just had her 2 year appt today and she weighed 24lbs.. teeny tiny! Lily weighed 18lbs.. and she's 7 months! ha This was Kayla's first appt w/o crying when she saw Dr. T. I was sooo proud of her! Dr. T did a great job at being goofy w/ Kayla so that she started out laughing. Kayla did cry when the nurse came to do weight and height.. she even got to stand up for both... no clothes off... crazy girl. Lily was nuts.. completely nuts.. but thats a whole other story! :)

Kayla sounded great, looked great.. just skinny. Dr. T said the summer was perfect for potty training.. so c'mon summer! :)

Merry Christmas

2010-12-26T12:50:00.000-05:00

MERRY CHRISTMAS FROM THE OLMSTEADS <3

A trip to the hospital..

2010-12-24T06:55:00.000-05:00

Last week was a very hard week for my family. Kayla got sick on Tuesday- we thought it was just her reflux, but it turned out to be much worse. She puked three times on Tuesday, and twice on Wednesday- and that was because we got a little smarter on what to give her for food. We did take her to the docs on Thursday- K was sooooooo not herself. She was tired, and didn't really get up from her Dora couch. When we got to docs she sat on Dad's lap in the waiting room- not like her! She usually is hard to keep contained in one spot! Then when we got in to see doc, she curled up on my lap in a fetal position and didn't move. She let the doc do what she had to do. :( - again not usual for Kayla. Kayla was VERY dehydrated. She wouldn't drink a thing! So we had to either bring her to the hospital or try to get her hydrated on our own. Jerry wanted to try first... so we did. We gave her a 12cc syringe of pedialyte every 10 min! She hated every second of it. It took two of us to hold her down and then half the time she'd outsmart us and spit it out. She was getting a bit better tho, so we know she got some fluids. We had to keep her up until 11 p.m. Poor thing knew when the syringe was coming... she'd start crying and kicking. We offered her her sippy cup first... but she never took it. On Thursday night she did well. But then on Saturday we got her up in the morning on and saw she had puked in the middle of the night- again! She didn't cry, fuss or even move! Still makes me sad that she didn't cry to let me know she had puked... :(

Soo- I called the doc again and she told us to come to her office again. This time, we had to go to the hospital! :( We should have done that in the first place... and spared K the fight w/ the syringe. But I mean did we really want her to go to the hospital if we could get her better ourselves? Anyway, we got there and she got her IV in and some blood drawn. Thankfully she didn't need to be stuck several times to get a vein. She needed to be held down for IV and blood drawing but I think she did pretty well overall. Once the fluids starting pumping in her, you could tell she was coming back! Sunday morning she was more peppy... and she ate a whole pancake, half a banana, and some captin crunch! It was amazing! However, she still would not take a sippy cup from us, but it was getting easier to bribe her to take a sip. We were allowed to leave by supper time on Sunday- a short stay but so necessary. She was diagnosed w/ Gastrointeritis (which I've had, and is NOT fun), dehydration and hypoglycemia. And a hospital trip just because she didn't want anything to drink! :(

Now she is very much her self again! :)

eating a cracker, and watching yo gabba gabba to help her rest.

This was Thursday night. We had to give the 12cc of fluids every 10 min. This was about 8 o'clock. She NEVER sleeps on her dora couch. At most, she's laid on it for 10 min. She was on this thing ALL day. We did let her sleep w/ us that night in case she puked.

she puked ....Friday night, the night we thought she was getting better. So we ended up in the hospital. :( They did ask me if I wanted a crib for her, but I thought she'd be happier if I just stayed in bed w/ her, so I said no.

Daddy and Kayla- we felt just awful for her! :( She wouldn't let either one of us out of her sight. We even had to ask if we could go 'pee pee'.

I think she is watching yo gabba gabba on my phone... that's what really sucked about the hospital. She had to stay put, but they don't have Nick Jr. So thankfully I have i-net on my phone and she was able to watch some Mickey Mouse and DJ.

This was the night we got home- the Giants played a horrible game, but we still put her in her Giants PJ's. :) She was feeling a bit better on Sunday night. I guess she was sick of her Dora couch so she sat in a box... goofy girl!

And here she is on Tuesday... a week from when she got sick. Messing w/ her sisters toys...She's back! :) She has food all over her face and she was pushing Lily's jumper back and forth- a little too violent- so I got the pic and made her stop! :)

Kayla did lose weight- all that hard work into making her gain- and she pukes it all up! UGH!! According to our scale at home, she was 23lbs... when she weighed in at the docs office, she was 21 lbs. So now there is only 6lb difference between her and Lily- Lily is 15lbs... :)

Stretched Patch

2010-11-18T20:38:00.000-05:00

We recently had another x-ray for Kayla. This was a follow up of the previous x-ray about 8 months ago when we weren't sure if she had reherniated. We did find out that she did not reherniate but rather that the patch is stretched... and is a minor problem. It will need to be fixed if it starts to affect her breathing. However, she seems to be fine and runs around like a crazy kid all the time. She's a talking fool and a very skinny girl! :) She only weighs 21 lbs... gaining VERY slowly! The track Lily is on, she'll pass Kayla's weight and then some!

Kayla does have another x-ray in April. Unfortunately after this appt we may not see our surgeon any more. :( He is retiring. It's very sad for us because we absolutely love Kayla's surgeon. Not too many people can do what he does so we will be sad to lose him. I'm sure he won't have anyone less than perfect to take over though.

However I'm sure he will be glad he won't have to see Kayla again as she is AWFUL at the doc's office. She cries the second they whip out their stethoscope.. and won't stop crying until they are walking out the door and she is all of a sudden a-ok and says "bye, cya!" I tell ya, it's gotta be hard for the docs to listen to her lungs with all that dang screaming and crying she does!! ugh!!

Here are some pics of our trip down to Syracuse and back..

x-ray time- this wasn't soo bad

This one was worse, but def not as bad as that bike seat thing!

happy now that it's all over, and she is looking for daddy's beard.. :)

reading her piggies book (i think this was on the way down)

We stopped at Babies-r-us to get her a potty and let her ride this thing..:)

she was very tired on the way home.. :)

Happy Halloween

2010-11-04T20:31:00.000-04:00

Kayla did not go trick or treating this year, but she did dress up and help pass out candy. She was a miserable little girl as every time kids came to the door to get candy she threw a fit bc we were giving out her bowl of candy!! She literally squealed like a pig every time!!!

It was fun taking pictures of the girls.... Lily was soo easy to get a good picture of, Kayla wasn't so easy but she was cute anyway! <3

Smart Girl 10/26/10

2010-10-26T19:30:00.001-04:00

My girl is just a learning machine! This is probably a boring video for you though... but I had to document it. :)

Make an on-line slideshow at www.OneTrueMedia.com

Fall has arrived.. brr!

2010-10-12T19:12:00.001-04:00

I do say brr.. but we have had some very nice days. Here are some great pics of Kayla and her little sister Lily.

The girls watching the spinning birds on the swing..:)

Kayla came over to chill w/ Lily <3

BLOCKS! :) Love her smile!!

Kayla and Mema

ahh leaves.. get me out ma!

family photo :)

Kayla and Mom! <3

All is well w/ my family. Kayla seems to be doing pretty great! She is learning more and more words.. half of them it really takes me a second to understand... she still doesn't pronounce her b's and p's and replaces them w/ d's..so that is hard. However, I know she can say those sounds bc she has before. I'm pretty sure her hearing is just fine though.. she seems to get scared by the fire siren when it goes off... and it's not very loud in the house.. so i feel her hearing is ok. She just needs more time.. she will get it. She knows quite a few of her letters too! :) She does have her next x-ray coming up on Nov. 3... I'm quite nervous for that. We think she is ok, but ya never know- and w/ how her appt went last time.. just puts ya on edge.

Lily is surviving the Kayla temper tantrums and seems to enjoy Kayla's company. However, Kayla doesn't sit still long enough for Lily. It's so cute to watch Lily watch Kayla. :) Kayla still gets a little jealous from time to time...but overall life is good! <3

Praying all goes well through the cold and flu months for everyone!!

18 months

2010-09-20T20:14:00.000-04:00

On Sept. 15 Kayla had her 18 month check up - last shot appt until she is 4!! (aside from flu shot) We were told that our Dr. in Syracuse said that Kayla will not get the RSV shot- I'm a little scared but I know she is strong.. just makes me nervous to not have that protection.

Kayla weighed 21 lbs 8 oz.. she gained a pound in a month!! Jeez louise kid!! She sounded good and everything else was well. She got her chicken pox vaccination and her flu shot. Now Jer and I need to get our flu shot- guess I should call our doctor here sometime soon!

Kayla is talking a lot now! She says a lot of words but some of them are hard to understand because she doesn't pronounce the b's or p's. She says doggie and kitty cat very well. She also knows a lot of animal sounds and just recently has shown Jer and I that she knows a few letters in the alphabet. She is a smart girl! :) She has come a long way since her evaluation this summer. Which I don't know if I mentioned but she did not qualify for speech therapy- and since July- she has grown soooooooo much!

She is still hard to feed.. one day she'll devour a grilled cheese sandwich but the next day she'll shove it away!! I waste a lot of food w/ this girl!! I do give her pediasure and just recently bought her some vitamins to help her thru this winter season.

I go back to work on the 4th of October- am I excited.. no.. but I can't wait to see some co-workers. I miss the adult talk.. and their company! Losing this post-baby weight I gained w/ Lily is proving to be quite tough as well. I'm getting a little discouraged but hopefully it'll start disappearing soon!

Good luck to all through the cold and flu season- I know we all hate this time of the year!!

Kayla is saying "Hi Lily"

Kayla reading to herself :)

She loves to play :)

Kayla is now a BIG sister :)

2010-08-19T14:46:00.000-04:00

Lily Anna Olmstead was born on Saturday, August 14, 2010 at 12:44 p.m. She was a quick delivery! Phew!! haha She weighed 7lbs 6oz and was 20.5in long. She is a perfectly healthy little girl. We were only in the hospital for one night before coming home. It was hard staying away from Kayla and is still hard not being able to do all the things I was able to do w/ Kayla while in my recovery stage.. but soon enough I'll be back to normal. :)

Kayla wasn't too interested in Lily... at the hospital she looked at her a bit but then started to find things to get into. She was quite jealous when Lily first came home but we think she is getting used to it. She can even say Lily's name... well it certainly sounds like it anyway! :)

Kayla meeting Lily for the first time..

The two grandma's loving my two girls <3

Mama and Lily

I'm going home w/ a BABY!! wahoo!! :)

Grandma and my girls <3

Nina and my girls <3

Mama w/ her two girls <3 (I was saying where is Dada so she would look at the camera, and of course I ended up not looking at the camera.. haha

"Kayla, where are Lily's fingers?" :)

Lily Anna Olmstead <3

Cousin fun.. :)

2010-08-12T10:27:00.000-04:00

It's been quite a while since I last posted.. I've been a blog slacker lately! I guess it just gets harder to post the older the kiddo gets.. :) But soon there will be two kiddos! HOPEFULLY SOON! I'm 5 days away from my due date and have only had the slightest bit of contractions- one here, one there... sometimes 10 min apart and then they disappear.. and it's only when I'm out doing something. I guess I should ALWAYS be out doing something so I can get this labor started! Jeez-a-loo! I'm not the best pregger person you've ever met- I hate being preggers.. I LOVE the outcome, but not so much the waiting. But it's hard to sit here and complain that I'm still preggers when I know a lot of you out there don't get to keep your baby in as long as needed...so I do consider myself lucky that she'll be hopefully healthy as pie. I think Kayla understands a little bit about my belly- but I'm sure she'll still be really surprised when I bring home a new baby- and I bet she'll be a little upset too. :( Poor girl!

Speaking of my little girl, Kayla does talk a little now- she did not qualify for early intervention speech therapy. I am glad, but also a little disappointed.. bc if she was going to get help, that would have been awesome. However, they said she was too "bright". She does the intonation of everything we say- but doesn't have the right sounds yet. Just a bit ago I was telling her to yell "come out lily" and she was, but only I would know that! haha She does say "mama", "dada", and "nana"- which is "nina"... and "baba" HOWEVER she will only use "Dada" correctly and incorrectly. She can say "mama" but won't call me mama. Jer's new trick is to ask Kayla who she loves more- Mama or Dada- and of course since she'll only say Dada she says DADA! what a dork! :) (jer that is) :) So another example would be her golf clubs- she LOVES her stinkin golf clubs- but she calls them da....da. So I know the different btwn her da da's... but some ppl wouldn't. It's hard, but she's getting there. :) She talks all the time- especially when she is in her crib supposedly sleeping! :)

Summer has been great- again, not a fan of being big fat pregger lady during this hot summer, but other than that Kayla and I have had a great time. Swimming, swinging, and playing w/ cousins. She has been able to see all of her cousins this summer, the last set to come next week... which is fantastic seeing how last summer I wouldn't let her near anyone. So this has been a blast for her. She loves to play w/ kids... we went to the beach the other day, and a mother came over w/ her 3 older kids, 5 and older, and Kayla would not stop running over to them... Jer I think was getting a little embarrassed of having to run over and keep grabbing her, but she had a good time. :) Of course I didn't have my camera either.. :(

As I sit here and type, Kayla is supposed to be sleeping, nap time... no- she is sitting up and saying "mama", "baba", "lala"... ! Goof ball!

Kayla and her cousins.. :) Next week she'll be able to play w/ Julian and Jack..can't wait! :)

Kayla and Alaina

Me and Alyssa :)

Kayla and Maddy

Kayla and Jacob

The Stomach Bug

2010-06-29T22:28:00.000-04:00

This past Sunday Jerry, Kayla and I went to Auburn, NY for a family fun day. I know most of you are thinking, Auburn?? haha It's ok, we had a meeting there on Monday so we went down the day before. We got to stop at the D'Angelo's for a couple hours. Kayla had a great time playing in their water fun park in their front yard. :) She got a couple of hugs from Mr. Charlie too. :) After our visit w/ the D'Angelo's we went to our hotel and had some dinner in an Irish Pub (my hubby's choice). Then we went to the pool and Kayla had a blast. She was shivering but do you think she wanted out? haha no way!! This girl is a fish!! :) She was even jumping off the side of the pool into Daddy's arms! Of course Jer kept one hand on her hand at all times! For some reason Kayla LOVES hotels. She runs from one end to the other all night.. putting her down to sleep is an issue tho. She can't see me or Jerry... so there has to be a part in the room where we can put her where she can't see us. She'll cry and cry- but eventually she'll go to sleep. But Jer and I have to be VERY quiet!

Our trip home (3.5 hours-ish) Kayla was awful! She cried so much! When we got home, she was much happier, and then it was bed time. Around 10:30ish Kayla woke up crying hysterically. However, Jer and I did not go get her bc sometimes that makes it much worse. She feel back asleep only to wake up 2 min later and cough a little and then vomit a whole lot!! :( Jer and I RAN up the stairs, I grabbed K as she was sooo upset and Jer cleaned up the mess. I got K downstairs and she was fantastic while I cleaned her up and then rocked in the chair w/ me for quite a bit. She was trembling a bit so we got her some water and then went back upstairs. She slept fine the rest of the night until 6:30 a.m. when she woke up crying again and then gagging. I ran into the room and sat her on the floor w/ a blanket underneath. Thank goodness nothing came out but she was obviously not feeling her best. After about an hour of milk, she puked again- big time! However after that, she has been doing well. I did get her into her pediatrician who listened to her and said she sounded good. She said bowels are being heard where they need to be, ears look good, and fever is low enough to be called a normal temp. We are still feeding her bland food and making her milk bottles about half but more often to keep it down. We are hoping she sleeps well through the night and the bug is gone!

I guess you could say Jer and I have been a lot less of germaphobes... We take her to Walmart, restaurants, I stopped showering after work and just changed my clothes, and she's been around a bunch of kids in crowded places. I just want her to be exposed to the germs, but not get the sick part.. guess I can't have it my way... :)

Other than the bug, Kayla is doing great!! :) We are still waiting for her to say some real words, other than uh-oh and hi. But I'm getting less and less worried as she is communicating in the beginning stages that most of your babies did earlier on. :) Kayla does things in her OWN time..!

Here are some cute pics of her that I have also posted on FB- so sorry if they are doubles for some of you! :)

Kayla in Nina and Papa's pool- silly fish!! :)

Loves chairs!! She's so goofy!!

Charlie and Kayla (love them!)

Yum Yum pasta pick ups! :)

Warm Weather

2010-05-23T19:53:00.001-04:00

It's been a while since I have posted.. it seems with Kayla getting older, and me getting more and more preggers, it's hard to find the energy to get on the computer at night and post. It's strange- all I would have to do is sit down in front of the computer, but once my bum hits the couch after Kayla goes down, I don't often move until bed time! :)

There honestly hasn't been much going on. Thankfully! :) Kayla is doing well- no she still isn't talking like she should be, but I'm not too worried because she is doing all the communicating things she was supposed to be doing a while ago- so I'm just assuming she is doing everything last minute to make me worry. :) She points to things and waits for a response, she talks (babbles) all the time.. she can say hi, mom, and dada- but we don't think she actually knows she is saying it. I did just teach her the sign more- it doesn't look like I do it... but she knows it's different from a clap and will do it when I say more while eating (sometimes). She is a screamer.. hopefully w/ more talking she'll stop that.

She does walk and is able to stand up without pulling on something- She LOVES the outdoors and the water. :) She knows one of our cats names- the other she doesn't see too much. She can show you where her head, hair, belly, toes, and knees are. When you say "where is your nose" she'll point to her face, but her finger always ends up in her mouth. :) She won't go to bed or naps w/o her two dolls, and when we go to pick her up from her crib- she always has both of them in her hands to take back downstairs. She is still just a fruit girl- I've tried everything to get her to eat veggies-- nothing works!!

All in all, we are doing well. New baby girl will be named Liliana Rae, Lily for short. We are excited but not even close to ready for her! :)

Here are some pics and a video of my baby girl - :) Some outdoor fun this weekend!! We had a great time!

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Kayla's first vacation

2010-04-20T15:47:00.000-04:00

Three days before Kayla's first vacation she got another cold! Arg! I was nervous, yes, did I question leaving her dr's area, yes, but we went anyway. K knocked her first cold right out of the park so I assumed she'd do the same. She had her last RSV appt and year check up the day before we left... so our doc got to listen to her and reassured us she just had a cold and she would be fine.

So off we went. K is still too small to ride front facing... BOO! She was only 19lbs 2oz.. which is good in my book as it seemed she was in the 17lb range for a VERY long time. She is a good eater- just a petite little girl. :) A friend loaned us her car dvd player which helped very much- however K wasn't too bad. She was actually very good in the car- we spaced out our drive so we rode for three days to get to Myrtle Beach and three days to get back home.

Kayla got to see and do many new things down in Myrtle Beach. She had a blast! As did her parents!! :) It was great to see my parents as we hadn't seen them since New Years! I also had an interview in Raeford, NC - pray it works out!! As of June 30th I'm out of a job and insurance!! :(

Here are some great pics we got while down in MB!

First hotel stay- she was good until it was time to go to her pack-n-play... that was tough!!

Second day riding we stopped at my brothers for the night. Kayla loved Julian's wagon!! :)

Julian loves it when my brother plays his guitar- K was interested for about 2 sec... :)

In the a.m. Julian still didn't want to share his toys- :) But that was ok- K didn't seem to care.

Our first full day in MB! It was BEAUTIFUL! So we went to the beach.. K LOVED it!!

that wave you see coming in, got Jerry and Kayla soaked! haha She didn't seem to mind one bit!! brrr!!

Nina, Papa and Kayla!

yes- most of my pics are from the beach, but it was a fantastic time!

she loved the sand!

her first big restaurant! She went to one when no one was there- so Margaritaville was much different... she was soooo nosey!

Broadway at the Beach- she LOVED! She got to see so many things, walk around and of course play in some water!

This was one of our rest area stops- btwn Kayla and myself, we had to stop a lot - my small bladder and her need to walk around. Jerry had taken her for a little walk while I went to the bathroom, and she saw me and started to come right to me... It would be beautiful pic if that ugly van wasn't behind her!

All in all we had a fantastic time- do we like riding for 18hours there and back- no not at all - but it was great to see my parents and their new house. Kayla LOVES to be outside- so she LOVED MB! haha we need to go some where warmer for K's sake! :) Oh and her cold didn't bother her at all- it finally went away the very last day of driving- no snot or coughs! But throughout the whole vacation she never acted sick.. was her playful self!! :)

New CDH Baby- prayers needed

2010-04-05T16:05:00.000-04:00

On CDH Awareness Day, a new baby boy was born with CDH. The defect was not detected in an ultrasound so the parents did not know their baby boy had CDH until he was born. He was air lifted from a hospital around me (who can not treat a CDH baby by any means) to Crouse, Syracuse NY where Kayla and Charlie were born. I just found out the baby boy is going to have surgery tomorrow. Please keep new baby boy in your thoughts and prayers.

Thanks,

Easter Weekend

2010-04-04T20:45:00.001-04:00

Our Easter Weekend was fun filled- it was so nice out we got to go on a picnic on Friday and Saturday and BBQ on Easter Sunday. Kayla got a lot of outside time which she absolutely LOVED!

Me, Jer and Kayla at the empty park on Friday. It was fun! And yes- I'm super preggers for only being 20 weeks!

Grampa got to come down to the park to hang out with us so I asked him to take some family photos- these two were my favorites. Even tho I'm huge.. no getting around that! haha

Kayla LOVES bananas.. and in this pic Grampa was trying to feed K her banana but she shoves her mouth so far on that banana- it freaks everyone out.. so he was playing a game of put it in and just as quickly take it out- she had a good time.

Then that afternoon it was still beautiful out so we took Kayla's Mud Maker outside and splash around in the water in the sink. She had a blast!! She got soaked.. totally didn't think to take her clothes off before she played in water... oops. :)

Then on Saturday we went on another picnic in a different park with our best friends and their kids. Kayla enjoyed a PB sandwich and the swings. :) Her legs did get a little pink- my fault tho- I didn't put the SPF 50 on until we got outside... :( but it didn't seem to bother her thankfully.

After a picnic in the park, we came back to our house with our friends for some relaxation and later on a BBQ. Kayla was hot- so I thought we could share a push-pop- as you can see this one was Cherry- and in this pic, she was yelling at me, bc I took a bite- when she wanted one!

And finally on Easter Sunday - a little chillier but still nice in the sun to go outside.. This pic was taken before Grandma, Grandpa and Uncle Tim came over.. She was still pretty with no food particles on her dress.. She, however, hated the dress bc it made it hard for her to crawl.. most of the day the front part of her dress was tucked in her stockings!

Gramma and Grampa came over and brought over an Easter bucket- :) Kayla is going to Myrtle Beach in a week so the bucket was fantastic. She got a pail, shovel, and the works for the sand. She also got a bunch of summer outfits for MB and some sun glasses. :) Of course their was candy in the bucket as well, which was bad for mommy! In this pic, Gramma and Grampa brought over Easter donuts for Kayla... she LOVES donuts..

Easter weekend was so fun- tiring, but so fun. We hung out with family and friends... couldn't have been better. :) Kayla enjoys being out doors and I loved that we got to spend the entire weekend outside!

Next week- Myrtle Beach!! Can't wait! :)

CDH Awareness and a Video

2010-04-01T16:48:00.000-04:00

Jerry and I are always happy to spread awareness about CDH everyday - however we are also very happy to set aside this one day to really encourage others to spread awareness about CDH by wearing turquoise and informing people about this awful defect. A lot of my co-workers wore turquoise today which really meant a lot to me! My Aunt Anne also said that she and all of her co-workers wore turquoise- they live several hours away from us so that is really cool!! So thanks Aunt Anne! I know my siblings and parents also did an amazing job at spreading CDH Awareness- so thanks to everyone!! Jerry and I and the rest of the CDH community really do appreciate it!!

Last year on this day- was Kayla's first day breathing on her own. Vince and Patty made Kayla this cute onesie that said "I am a CDH survivor". I did not feel too comfortable dressing her at the time, but we did get to put it on her crib. :)

And today- K was easy to dress- and full of smiles this a.m. She was adorable but that made it very hard for me to leave her!!

she did not like the feel of the grass!! :) it was hilarious!

A happy girl on CDH Awareness Day- we could not be more blessed!! :)

Here is a video.. K is just learning how to walk.. she doesn't pull herself up to stand w/o help just yet, but she does enjoy walking. So I have taken a few video's over the past couple of days of K walking- and learning. :)

Photo and video editing at www.OneTrueMedia.com

Scary X-ray

2010-03-25T20:00:00.000-04:00

On Wednesday, we had to take Kayla down to Syracuse for her year appt. with her surgeon.. which was pretty much just an x-ray and a "hey how is everything going" with Dr. R. Well.. that "hey how is everything" was a "hey so the x-ray looked a little strange to me." UM YIKES!! Mama Olmstead does not like to hear anything like this.. so of course I immediately panicked! Dr. R didn't seem too concerned but he listened to her anyway and said she sounded great- didn't hear bowels up in the chest or anything.. he just said she sounded "great"!

Now there was also confusion with the x-ray technician.. apparently the last time we were there, the technician labeled the sides wrong. Therefore it was confusing to the technician on Wednesday- so when Dr. R got that all figured out he came back to us and said I really don't think she's reherniated. He proceeded to show us the x-ray- and where the gortex patch was - it was high- and not at the same level as the diaphragm - the real diaphragm can move normally, but the patch does not ... does not function like that. Dr. R said that her patch appears to be thin and she so small that it's hard to see much and it will be easier to tell when she is older - so he thinks in 6 months he will be able to see better.

So pretty much we were told to watch her- and they would check up again in 6 months. It's still a little scary to think about her reherniating but for now all we know is she is doing well. However, since he didn't want to do another x-ray that same day, or even in 3 months makes me feel a little at ease seeing how if he thought even a little bit that she had reherniated that he would have done the x-ray sooner than 6 months.

On a happier note- here are some cute pics of K at the playground.. she LOVES the swing!! :)

It's a ....

2010-03-16T13:31:00.000-04:00

HEALTHY HEALTHY baby girl!! Just got dr confirmation that all is well with the new baby!! (of course all is well with what they can see on the ultra sound). The ultra sound tech even pointed out the diaphragm and stomach to her trainee - which really helped Jer and I out to make sure there was no CDH!! I'm sooooo very excited!! I was so stressed for that stinkin ultra sound!! Now I'm good to go!! haha YAYAYAYAYAYAY!! :)

Happy Birthday Kayla Mae! :)

2010-03-07T16:02:00.000-05:00

Kayla Mae on her birthday- :) She got gifts from mommy and daddy, Vince, Patty and Charlie and a small cake on her actual birthday...

The Saturday following her birthday we had a few people over. A FEW! :) And it was such a nice day we got to open the windows and go outside for a while. So for her bday I made a pig cake.. I figured this was probably the only one where I got to choose which cake she would like so I went for what I would love! :) I wasn't totally happy with the cake- it didn't turn out how I would have liked... but it worked.

We had a great time with everyone who came to see K on her first birthday!! We know we have made people feel very nervous about being around her and keeping you from her was hard to do as on her bday she had to get some stranger tears out- sorry for that! But I am glad she quickly warmed up to you and hope she sees you soon again as all of our other friends and family.

Kayla got a lot of toys for her bday which I'm certain she LOVES them all- dada and mama on the other hand.. haha no they are great! Just more to pick up at the end of the day!! :)

Kayla has grown so much in the past month!! She now can say "dada" and sometimes we think she says "mama"... but of course not knowing who is who or that they have a true meaning... but she does say them! Which has been a struggle for me.. in fact it was the DAY OF HER BIRTHDAY she finally said "dada"!! haha phew! K has also conquered:

- standing alone- for a few seconds..

- walking with just one hand on hers

- climbing the stairs with ease

- eats well - Easy Mac being her favorite- lots of real food - :) The jars are the fall back.. :)

- she drinks 3 bottles a day, she is now up to 5oz of whole milk mixed with 2oz of formula

- drinks from a sippy cup ( a straw one) well- but will not for "baba" times..

- knows what "baba" means, "get the ball", "throw the ball", "where's my eye", "where's my nose" ( and with the eye and nose deal, she was sooo cute in the beginning bc she would only show us where the eye was on her toys! now she can do it on our face- but not hers! :) )

- sleeps without a binky at nap times, only has a bink at bed time.

She is a big girl and proves to be smarter and smarter everyday. We can't wait to see what she starts doing in the next couple of months!! :)

Sick of Winter

2010-02-18T16:04:00.000-05:00

I'm sick of the cold weather.. sick of the snow and sick of wearing a winter coat that barely fits me bc of my big ol belly!! I think K is sick of being cooped up inside too-

let me out ma!

Kayla is 11 months and a half now.. so close to a year! It seems like just yesterday I brought her home from the NICU and said I can't wait till she is a year old! haha it's finally here! She will not have a party- maybe we will make our annual family bbq in the summer be partial bday party too. And of course there will be no SNOW in the summer- so it will be warm temps and fun to be had by all! But for K's bday I have already ordered her gifts and a bday outfit- problem is I don't know if it'll match.. haha hoping it does!! I have some what decided on making heart shaped cupcakes for her bday but not sure.. any ideas? I love to make desserts... and be creative- but I am not Patty - her turtle cake was amazing!

Anyway- here are some cute pics.. this post was just to complain about the winter.. it's wearing on me! and K too!

Happy Valentine's Day!

Playing with DaKota .. she loves her!

peek-a-boo

2010-02-07T18:03:00.000-05:00

happy

sad

knows where her toy box is.. squatting down to see which she would like to play with! haha

just got done drinking a bottle all by herself!

eating toast with butter!

Kayla, for the first time, got to play with other kids. Jer and I have been real, ~~over~~-protective with this winter, and decided since our best friends and their kids were all healthy, that having them come over Friday night was ok. K LOVED it! :)

and finally- mommy and kayla! :)

Video of K playing peek-a-boo... she just learned how to do it and she does it so fast sometimes it's so cute! :) haha When she first learned how to do it last night, she got so excited she could hardly keep her hands up at her eyes to play- she would throw them down and do a little excited dance! It was so funny!!

Make an on-line slideshow at www.OneTrueMedia.com

Lots of Stuff at OneTrueMedia.com

2010-01-27T22:24:00.001-05:00

This is a video of Kayla dancing, pooping, playing, clapping and climbing. In the clapping video- I kept it rolling after she clapped just so everyone could hear my husband singing in the background.. and not being happy it was caught on video! :) Also in the stair part video- check out Georgia- the gray haired cat, she is trying to hide on the side of our bed... haha!! And just so you know, we just moved... that is why our bed is on the floor and our house is a mess! :) I know the video is long... but I love everything she does! :)

Make video montages at www.OneTrueMedia.com

Kayla Update

2010-01-17T20:41:00.000-05:00

Kayla Mae is doing great! We have had a pretty quiet winter (phew!) and hope it continues to stay that way! We have been pretty over-protective this winter though. Kayla does not go anywhere.. if we need to grocery shop, one of us will go or a grandparent will watch her while we go. She doesn't go around other babies, and hasn't ever really- which could be bad in the long run, but we are trying to keep those lungs as healthy as possible for as long as possible.. and yes- I know germs are good for her, but maybe next winter! Jerry and I just aren't ready for more drama so we will continue to keep this winter pretty boring for her.

When the temperature gets up to around 35 degrees (which doesn't happen very often) she gets to go outside. She loves it too! Can't say I blame her tho!! I do feel bad that she doesn't get to go anywhere..but she is quite content with seeing her Grandma everyday and her Grandpa every now and again. Nina and Papa are away for the winter- but come April (my spring break) Jerry and I are going to take Kayla for her first trip to Myrtle Beach for a week. We are excited! We will be driving- too scared to put her on a plane just yet- that may take me a couple years to get ok with. So it will be a long trip but totally worth it!

Kayla gets her RSV shot every month, the nurse will no longer go into the room- last time Jerry had to take Kayla and weigh her and report the weight to the doctor! Kayla just cries every time she sees the nurse (can't blame her there either!) And of course she cries when she sees the ped, but she only comes in for the shot and leaves! So the nurse really does save a lot of drama from Kayla by not coming in the room any more. The ped is a little concerned with K's weight, but I think it's because she knows I'm a freak and worried about it for so long. Kayla has been in the 17lb range for a LONG time... However, I feel as though Kayla is eating well, 4 bottles a day, 5 oz each, sometimes 6...she eats three meals a day- jars! We have been giving her puffs, toast with butter, she'll only suck on that, and grilled cheese sandwich- which again she will let you put in her mouth, but I feel like she just swallows it.. I am continuing to try spaghetti-o's ...I did try a real sweet potato- but she didn't like it.

Finally a tooth is popping through!! Just one- and it's taking a very long time, but you can see it now. And you can tell it's painful for her... she screams A LOT- but she also screams when she is happy- so it's just a day full of high-pitched screams.. they are soo loud, one can only take so much!

She crawls every where- it is very exhausting to keep up with her- me being in my first trimester and having ZERO energy as is, keeping up with Kayla who NEVER stops- is hard! She really wants to walk, but I just don't have the back to keep walking her! How on earth do you parents do that?! She does great at pulling herself up, she babbles, not the dadada, but she does do jibberish- yeadibayea something crazy like that. haha and then screams!

And now- a fun fact for Kayla to hate me for when she gets older- she now lifts her butt cheek up to fart! You know when you have a fart, and you tilt to the side to let it out, well she does that- I'm wondering if she got that from me or daddy?! haha But it's sooo cute! And watching her start to poop when she is in the crawl position- omg so funny!! And she stays in that position until she is done, and then she'll sit on her bottom YUCK.. so I have to be fast! :) Most of the time I just pick her up as she is pooping.. :)

Please pray for us to have a boring and healthy pregnancy! We are just going on 10 weeks soon, which means the diaphragm should have already grown! My first appt we had to do an ultra sound bc they could not find the heart beat- YIKES! So they did the ultra sound and found it 171 phew! :) and the lady printed out a picture for me.. so tiny! We honestly don't care what we are having- as long as it's healthy! Boy or Girl.. just healthy! :)

Praying for you to have a healthy winter! Keep those hands washed and sanitized! :) Stomach bug has been going around and I heard H1N1 is coming back.. hold your breath!! haha only what 3 more months to go before we are in the clear?! haha

I'm going to be a...

2010-01-07T16:51:00.000-05:00

It's official...! We will have another little one around Aug. 17. Now is the time the diaphragm grows, so please pray that this time we get a whole diaphragm! Only complication so far is my under-active thyroid which was caught in time to get me on medication! We are hoping that is the only complication through this whole pregnancy!

So please pray for that diaphragm to grow! :)

Praying for all you CDHer's out there to get rid of that RSV you may have or already have picked up! Praying all is well for everyone!! Wishing it was summer too! :(

Enjoying the Holidays

2009-12-28T20:48:00.000-05:00

We had a very merry Christmas and plan on having a fantastic New Year! :) Happy Holidays to everyone!!

Wellness Check Up

2009-12-18T20:34:00.000-05:00

Kayla had her 9 month wellness check up today. This is how the apt began.

It was about 8 degrees when we left for her apt so I had to dress her in something warm. This was the first time she had her fleece body suit on, one her cousin gave to her (thanks Amanda we def needed this!!!) but Kayla absolutely hated it!! As soon as I sat her up in it, she started grunting and making very ugly faces at me and Grandma... it was so cute and all I could do was laugh at her. I'm a mean mommy!! So finally we got to our apt just on time and we waited for an hour before we got to see her ped...However, our ped totally sits down and talks to you, listens to you, tells stories of her own to make you more at ease... she is very personable.. just doesn't know too much about CDH. But she is very smart! She let me ask my million questions (one including the recall on the h1n1- which Kayla's was not on the list)! She went through the list of what K was doing and not doing- pretty much K is on schedule with everything except the talking part.. she doesn't say "da", "ba"... things like that. She just makes lots of noises.. silly ones! So we are and have been trying to get her to say the things she is supposed to be saying.. hope she does it soon!

Kayla does the army crawl now.. and has even crawled to me when I put my arms out! So stinkin cute! She now waves, when I hold her arm out, then she will flap her little fingers up and down, and she can clap! She doesn't get her hands together to make a noise, but she brings her hands together repeatedly like a clap. She is doing well I think. :) We just have to work on that talking thing.

Our ped said she sounded great on both lungs, tummy felt good (and she squeezeddddddd!) She is in the 25th-50th percentile for height and weight as she has always been (17lbs 6oz and 27 and some for length) but her head is in the 75th percentile.. which that has always been too.. dang daddy for his big head! lol She also got her second h1n1 today so she is all protected now. She cries any time the nurse comes in the room- and then when she sees our ped with the nurse she cries.. she knows! Poor girl!

Aside from a huge puke that drenched Grandma today she is doing well. And I think that puke was dr visit related. So much crying at the visit, missed a nap, missed a feeding, got a shot- too much I think.. that she ate a lot and then chucked it all out. She is fine now- and pretty much has been since she barfed. :)

Hope all are well- I know this was long- sorry!! :) Here are some cute pics of her... :)

Kayla right before we left for apt! :)

Such a happy girl...

She LOVES it when Daddy vacuums!

This is as far as she gets to real crawling (hands and knees) then the butt flops down and she army crawls!

Got a beautiful Christmas card from Patty and Vince and Kayla was reading their lovely note :)

Reading again- she loves it! haha

FINALLY she loves her puffs and those cheesy puffs things..

Our Holiday Card

2009-12-08T16:42:00.001-05:00