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. 

'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! :)

"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.  

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

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

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!!

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!! :)

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 

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! :(