My girls at their "Big Show"... they are used to having the teacher right in front of them.. it was a little different. My cuties.

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Happy Easter! :) We had a great day- missed Daddy in the a.m. because he was working but that didn't slow us down.  We hunted for our baskets this morning and got our 'pretty dresses' pictures done and out of the way! :) 

Then, after a good nap, we went over to Mema and Deda's for dinner and yet another Easter egg hunt.  Kayla LOVED the hunt while Lily saw two huge stuffed lions and only worried about trying to ride them.  They both had a great time.  

Oh yea- and after dinner- Mema made an Easter cake - Lily LOVED it - but Kayla only licked a few times of frosting and then begged for more candy instead.

I hope everyone enjoyed their holiday!  <3

Tears.Instant tears.  My doctor just told me that my unborn child had this defect.  A defect I have never heard of before.  Yet, tears streamed down my cheeks.  Congenital Diaphragmatic Hernia. Congenital (born with) Diaphragmatic (diaphragm) Hernia (hole).  There is a hole in my daughter’s diaphragm? 

Research.  Research was not a good idea.  My husband and I didn’t find too much on Congenital Diaphragmatic Hernia (CDH).  And what we did find broke our hearts.   We found out that this birth defect affects approximately 1 in 2,500 babies, 1,600 a year and half of them do not survive.  This defect is very rare!  The hole in the diaphragm creates a major problem.  This hole allows for abdominal organs, such as the stomach, spleen, intestines and liver, to migrate up into the chest cavity, pushing the heart over and taking up all the space allotted for the lungs. 

My hope is to spread awareness of this defect as most parents who find out that their babies have CDH do not even know what it is.  My husband and I were devastated when we learned of all the issues CDH brought to our unborn child.  We want to spread awareness to acknowledge that this birth defect still needs more education and more research to improve the survival rates and to lessen the residuals survivors and their families endure.  My hope is that after reading this email, you’ll know what CDH is and go out and tell someone about it.  Just one person makes a whole lot of difference. 

When my daughter, Kayla, was born, she let out the tiniest whimper, which was huge for a baby that hasn’t developed much lung capacity.  She was instantly intubated, sedated and paralyzed.  My doctor, bless her heart, let me hold my new born daughter just long enough to get a picture with her.  Then she whisked her away to the Neonatal Intensive Care Unit (NICU).  Six hours later, we were allowed to go up and see her.  We weren’t allowed to touch her.  We weren’t allowed to pick her up. We could only talk to her.  Sit next to her.  Not help her.  Tubes going everywhere, in and out.  Monitors all around, beeping.

13 days go by.  13 whole days of just sitting next to her, praying she would become healthy enough for her surgery. On that 13^th day, Kayla was stable enough for this major surgery.  Kayla’s stomach, spleen, intestines and a portion of her liver had all migrated into her chest cavity.  A Gor-Tex patch (the same material that makes your boots waterproof) was used to act as the missing portion of her diaphragm.  She remained intubated, sedated and paralyzed for the next 10 days.  On her 23^rd day, she underwent another surgery.  Finally, on her 25^th day, my husband, her father, was able to hold her for the first time.  Day 29, she was extubated. 

Now we fight to feed her.  A baby without milk for almost an entire month was not very skilled at eating, or holding it down once she got the hang of it.  As we fight to feed her, we also fight the pain medications.  We try to reduce the pain medications, and that creates a drug withdrawl.  She was miserable.  I remember holding her so tight I thought I’d hurt her just to help her not shake.    Slowly, she beat everything CDH put up against her.  After 55 days of living at Crouse Hospital, she was healthy enough to go home. 

Shortly after her 2^nd birthday, at a routine x-ray appointment, we learned that she had reherniated, meaning her patch was no longer stitched all the way around.   This meant another major surgery.  This time, only her intestines had migrated into her chest cavity, but her spleen was stuck to her patch and when they moved that, it caused a little bleeding but thankfully was quickly fixed.  Her large intestine needed stitches as it had small abrasions on it and they had to remove her appendix for future safety as it was on the wrong side. 

She is now 3 years old.  She is the strongest person I know!  She loves lollipops, dancing and singing.  She enjoys swimming and playing softball.  She loves to go shopping and out to eat.  You would never know what my little girl has gone through by looking at her.  She talks non-stop, plays hard, and lives well.  She still has some issues, but they are small in comparison to what they could be.  We were lucky.  Our CDH baby survived.  Many don’t. 

She will continue to have x-ray checkups, her next being Apr. 11^th and we are praying for a good report.  She cannot play contact sports and most likely will not be a track star.  She will have to deal with her worried mother her whole life.  Thankfully!

Please help spread awareness for CDH.  I have two blogs, one is personal, all about Kayla and the other is to help other CDH moms and dads, to provide them with information I had learned along the CDH rollercoaster.  Wear turquoise in support of CDH awareness on March 31^st and tell at least one person about Kayla’s story and that will help make a difference. 

Kayla woke up the morning of her birthday, March 4, 2012, to a living room filled with balloons!  She was so excited!  She didn't even notice her presents for at least 5 min due to the excitement over the balloons.  She was very excited for today.  She kept saying I get to 'unwrap all my presents' and if anyone said 'happy birthday' to her, she would say 'happy birthday'.. ha!  I think she was most excited to blow out her candles.  She talked about that from the first moment she woke up in the morning.  She talked about her 'party' all day too. 

Her first tricycle

princesses! 

the shirt I made her.. <3

Her Belle cake I made.. She LOVED it! phew!

My miracle!

She had a good day.  Thanks to everyone who came to see her- Those who did not and you are wondering why you weren't invited- I really dislike having parties- to be completely honest- people buying gifts for Kayla is very much appreciated but I feel awful that you do.  So I try not to make too many people do that. It's awful I know- but I swear we will have a get together this summer- more than once! :) BBQ!!! Who's in?!

The other night, Jerry and I were fixing our plates at the kitchen counter while the girls had already started nibbling on their dinners.  (Jerry and I wanted something spicy, so we didn't have what the girls had)  All of a sudden, we hear "BANG" followed by an instant hysterical cry.  We turn to look and see Kayla on her back on a broken chair... I assume her back was hurt in the fall since it broke the chair..

So I immediately run over, pick her up and pull up her shirt.. nothing.  So I let her turn around for a comfort me hug and she is bleeding big time in her mouth- as soon as we saw the blood- her lip swelled- 

And this was one of the times K was eating.. really eating.. ravioli after ravioli with a small bribery of goldfish- she got three fish for every ravioli.. hey- no judging- she was eating! Then she fell. However, after the fall and some ice and comfort.. she asked for her bag of fish and ate a TON of fish.  She was spoiled the rest of the night.  

The next day- she was fine.  Never once complained.. even tho Jer and I were worried and kept saying how awful it looked.  When you asked her about her lip, she would say "I fell down and broke my chair.  I have a fat lip." And loved to get her pic taken to see her lip... :) 

She was showing the camera her lollipop- she's lucky it didn't touch the lens... :) But in this pic, you can see the black and blue on the outside- looks the same inside! ouch!

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! :) 

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!

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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

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

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!! :)

29.  I am thankful for chances!

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!