Iley is out on day 5!

5 days was never in the pre surgery conversations. Not once.  We heard 7-10 days unless there were complications.  No complications:).  our God is an awesome God...He reigns from heaven above....Praising Him for leading us to the best surgeon in the country for this heart condition.  We heard every where we went how lucky we were to have this surgeon performing the surgery.  

Troy flew home on Sunday with plans to come back and get us on friday.  soooooo....We (Iley and me,Mom) are staying at the little motel across the road from the hospital.  It is old...as in...it still has real keys for the doors....(which annoyed troy when he stayed there cause they are big and harder to put in your pocket) and one very little elevator.  But...it is clean and nice.  It has two restaraunts in it so we won't starve either:). If we run really fast to the end of the hall the minute we first hear it...we can even watch the helicopter land on the roof of the hospital....way cool.....oh and we have to go down the hall and around the corner to the only ice machine.  Listen to me!!!!,   There are starving people living in dirt floor huts and I'm worried about my carpeted walk to the ice machine.  How pathetic is that!   truely I am blessed!

It has been so amazing to hear of all the people praying for this little girl!  We thank you all!  On that note I'm thinking I need to ask for prayers that she would GO TO SLEEP!  She's chattering away And saying mommy...every little bit.  I told her she needs to go to sleep to which she answered "I don't want to go to sleep". So I said then just lay there and be quiet.  " I don't want to be quiet, I want to talk to you".   Yeah I noticed.  She was trying to tell me something earlier and I interrupted her to try to help her story along and she told me shhhh and put her hand on my mouth so I couldn't talk.

We ate supper at the restaraunt downstairs and she proceeded to charm all the people there.  She merrily said Hi to everyone going in, and bye see ya to everyone going out.  The chef made her scrambled eggs...and the waitress made me some fresh decaf coffee:) ahhhhh!   Iley snarfed the eggs! They did look good...like real eggs and not the blobs of yellow fluff she ate at the hospital.  Then she ate a whole banana when we got back to the room.

She is doing amazing, and I will keep you all updated as I can.

Wren is doing good at home too....at least that's the report I am getting.....they could be fibbing to save me from worrying....I've also heard that she is eating up the individual attention and enjoying having personal slaves.    She was a little weepy this morning,  and really glad to see her daddy tonight.  He showed her pictures of iley in the hospital and told her we would be coming home soon.  Hopefully she understood a little.

Ok this was started last night and now I am adding to it.  Please pray for my mother!  She is staying with my kids, and she is sick:(. Throwing up,   Ugh!

Iley is still doing awesome!  She's coughing more today....which I think is pretty normal.  And a  good thing cause she's coughing all that junk out.  She,s up playing and chirping.  We went down to the restaurant downstairs for breakfast then walked over to the hospital to get the baby aspirin we forgot to get yesterday.  (She has to take a half of one everyday as a blood thinner.) I pushed her around in one of the hundreds of wheel chairs.  They are literally lined up!  We visited the gift shop and tried on all the hats, and played with all the toys....that's what they get for kicking us out so soon;). Hee hee.   I have lots of pictures but can't share with you:(.   We ate at the soup and sandwich joint for lunch and now she's playing with her toys and pretending to talk on the phone.

And that sums up our exciting existence right now....zzzz

Post Surgery Day 3

 The more we have gotten to know Miss Cricket..........the more we worried how surgery would go for her.  Or more specifically.......post surgery. This is the child that will limp around all day because she has a little scratch on her foot with a bandaid on it.  The one who wants a bandaid on the tiniest owie.  what in the world will she do when she has an owie all the way down her chest..........that really hurts??

So far she has amazed us with her resilience and toughness.  She cries when they have to take out tubes, or mess with changing a dressing on the incisions etc.  But the girlie who whines and cries forever over the smallest imagined or real offense...........is NOT here.  She's been a dream  patient and such a love.

I do wonder what in the world is going through her head.......maybe with the drugs she's on.....it's visions of sugar plums and all things pleasant????  Hopefully she has felt very little pain.  

She had a good night  last night, up a few times but went right back to sleep. Today.... She`s had all her tubes removed.....rough day!  The chest drainage tubes were the worst.  She's done amazingly well through all of it in spite of the NO FUN factor.  Her catheter is out as well.  She has pottied a couple of times, but needs to more.  She also needs to do a big job:(  which all the meds she's on is not helping.    I'm not sure she can leave until she does.  They plan to get her up and walk her around tomorrow to help all the fluid to drain and body functions get rolling. 

The surgeon is supposed to come by in the morning........I think.......or Maybe it's on Monday?  He did surgery.........then had to leave the next day for his Mother-in-law's funeral:(  So we haven't seen him since right  after surgery.  The nurses assure us that they are in contact with him and he is giving orders from afar.  A couple of other Cardiologists have been in to see her though.  Every one thinks she is doing great.....and she's being much made over because she's such an easy patient........and for just being really cute........I'm sure it has nothing to do with the fact that most of the patients are over 65.  This is not a childrens only hospital, so she doesn't have much competition..........but............she is adorable:)   I look at her sometimes and wonder how did I get so lucky to have two of these beautiful Asian babies?  I hope she's feeling as lucky to land with us!!!  I think I'll wait a couple of months before I quiz her on that one.  My ratings might not be too high rith now!

Thank you all for your continued prayers!!!  Sorry there won't be any pictures till I get home:(  I forgot the camera card reader at home, and I can't get the Ipad pictures to post.

The Tube is out!!!!

The breathing tube came out this morning!  Which was NOT pleasant for her!  They had to suction out her mouth...and throat....then pulled the tube out and there was still too much rattle so they went in through her nose.  SHE WAS MAD.  She was screaming....very muffled cause her vocal chords weren't really working yet.  Then she started saying mama, mama, mama....break my heart!


Then she fell asleep.  When she woke up the next time she was much more alert, and even smiled a little and was glad to see her balloon and giraffe.  She,s tried to sit up by herself...and ate a bowl of jello....and threw it up...all over mom, sand the whole row of stuffed friends by her side. UGH!

The picture showed up while I was typing...so if its not there again...sorry!  Not sure what to do about that.  Thank you all for your continued prayers!  So far she is doing amazingly well.  I credit it to her Heavenly Father hearing His people call out!  Thank you for lifting her up with us.

Love to each of you, and God's blessings,
Judy

Out of surgery

Iley is out of surgery and doing well. They were able to repair the valve.  We asked if she threw him any of the curveballs that he mentioned, and he said "a few, but we dealt with them". End of discussion.  Ok then.  He did say that hers was a difficult repair but that she did well and everything went well.  They also closed the ASD and VSD and reduced the size of her right and left ventrical.  We were worried that they would have to leave her chest open .....he mentioned that....if her heart had to much swelling from the stress of surgery....they would leave it open to reduce pressure.  We were not loving that idea.  But she is closed up and they are thinking they will be able to take the breathing tube out in the morning and start to wake her up.

She started to wake up once and started to Sign drink:). They quickly put her back under.

Warning...I am going to post a couple of pictures of her with all the tubes.

Iley is in surgery

Hello everyone,
We are sitting in the waiting room at Mayo.  iley went into surgery at 9:30am.  I was able to go back to the surgery room with her till she went to sleep.  She was her chipper little self up till they put the happy gas on her.  She even asked for a GREEN  mask like moms.  I had to put on a blue suit and hat and shoe covers.  

I was doing really well till they put the mask on her.  She started to fight it...which they said she would do....then she went to sleep.  She just looked so tiny and vulnerable...and it just hit me how trusting she went in there....trusting that everything would be ok cause mommy is here with me and will take care of me.....what will she think when she wakes up in the shape she will be in?  I,m praying that she will somehow understand.

They came in and told us that they started surgery at 10:45am.  They put her on the heart lung machine at 11:14am to do the main part of the surgery.  We are waiting and praying to hear how it went.  

 She went with me to the gift shop yesterday to pick out a "bear"  Like Wren got when she had surgery.  She wasn't interested in any of them until we got to a little stuffed giraffe.  Then she was very sure that's what she wanted!  So I told her I would bring it to her as soon as the doctor was done fixing her heart. She also picked out a helium balloon.  I tried to interest her in one with Winnie the Pooh and tigger...but she was so so on them until she saw a solid purple one shaped like a star.  THAT was the one!   She's been asked about them till the nurse came in to take her back.  The giraffe and balloon are purchased:) and waiting.

Thank you all for standing with us in prayer!  We know The Lord is in control and HIS WILL will be done.  Trusting Him whatever the outcome

Kyndahls Kansas Bridal Shower

Because Kyndahl and Thatcher are much loved....and most of the Kansas friends and family couldn't make it to her shower in Ohio....sweet people that they are....had one for them in Kansas. 

All the decorations behind us here were gifts:)  Except the shelves.  They belong to the library.

Kyndahl with all of the lovely ladies that helped.  From left to right.....Marla, Carrie, Lucy, Kyndahl, Leann, Katie and Carol.

 And of course Wren and Iley thought they should be in this picture with Kyndahl too! 

The Yummy food....Pretzel bites and cheese dip, apples and dip, and a sugar cookie.  Hot cider and water for beverage.

Most sat in their chairs and ate.....some sat on the floor.

 Then she had to use her napin for a picnic table cloth....and really get down to business!  She licked the cheese dip clean!

 Kyndahl had lots of little "helpers" again! 

 These were right before we walked out the door...."the white door" is right on the way out and always so handy....that's why you see it so much:)  They all made me smile....so I put them all on.

 And OF COURSE.......Ms. Wren HAD to carry the bag!

 This was this morning...bed heads and all....just hanging out. Notice Wrens right eye...:(.....still a little turned in after MONTHS of patching!  sigh.....

LOVE this one of my Sherm Sherm.  He really is such a Teddy Bear:)

 And the duct taped finger.......????????????.........just because he LOVES tape!

 They were selling hats...all stuffed in the handy little case......Hats for sale....hats for sale.......anyone want a hat?

 Miracle of miracles!!  They sat and put this puzzle together with only 1 squabble!  ALL BY THEMSELVES! 

 Ok.......this next one is totally random....but struck me funny for some reason......maybe because my reasoning is hanging by a thread most days.....and NO I wasn't drinking the wine.  But seriously....how does this collection of stuff end up on my kitchen counter???  Wine, a toy cupcake, deodorant, super glue and a leatherman.  I found them just like this????  Such an unlikely chummy group.

And this fuzzy face popped in before heading to work....so he made it on......:)  He looks so thrilled huh!  Sorry to make you wait till the very end El:)  But wasnt' it worth it...hee hee.

A quick update on the Audiologist visit.  We like them.  Wren cooperated well in the sound proof room.  The Audiologist would make either voice noises or ling sounds or beeps.  When Wren hears them she is supposed to put a toy in a bucket, a peg in the board, a puzzle piece in the puzzle...etc.  Some she definately heard....others we wonder if she was picking up visual clues from around her....our expression changes, or some movement.  They didn't change any of her settings for now.  They felt like they were high enough and she was making good progress, so left them alone.  We go back in a month.  We also got to meet a lady who was implanted later in life, and she showed Wren her C.I.  and let Wren put hers on her. 

On the way there we stopped to potty....nothing unusual there:)....but while Wren was waiting for me to get done, she was signing "hear"  like she heard me going......and then the person next to us flushed the toilet.....she went Ahhhh!(shreik)!  signing HEAR and went around to check behind me to see if it flushed!  That is BIG!!!  she recognized a sound....knew what made it!  Then walking into the store, she signed "hear" and heard her boots clomping:)  and signed "hear" when the wheel on the cart was going thump a thump a thump.  She is hearing more and more!! 

At the end of our Rope...

Literally! Ha Ha!  They asked to do this!  And they were having a ball......although....it did cross my mind that it might be a good arrangement next time I want to clean house..........??

 Ok....WARNING  If you are squeamish....you might not want to see the next picture!  This was the lovely "gift" my dogs so nicely left me right outside my back door:(  Blech!  Ash very kindly with his handy pliers....carried it off some where......BUT.....The cat came back....it wouldn't stay away....it was laying in the side yard....the very next day.....  Today it was just a leg on the step.  Two days ago.... it was a cow leg on the patio.  UM Hmmm.  Lovely.  And the dogs wonder why no one wants to pet them???  I've had a Whole cow leg that was bigger than the dogs.....a jack rabbit head....multiple rabbits......all left nicely like a peace offering.......I must be a really good pack leader ....with great hunters......why am I not feeling the love???  Oh and Then Thatcher calls and wonders if he can put the deer head he shot..... in my freezer!  Just what I need...open the back door.....dead animals....open the freezer......dead animals.......well dead animals that are recognizable.......technically there are usually dead animals in there already;-) but........

Isn't this just what you want to see when you step out the door!

Ok moving on.....that was not a lovely post!  Update on Wren and Iley's speech progress.

The week started off a little rough for Wren.  We turned her C.I.'s up to the loudest program (still not full volume)  on Monday morning.  It must have been enough louder that she was a little sensitive.  She did really well with her Ling sounds ( ooh, ahh, S, sh, ...i forget the rest..)  She has two of them that she consistently mimics back to the teachers....some are still sketchy.  She's making really good progress with that.  But we also changed up her schedule a little at school, During playtime Mrs. Kay took her over to the preschool room to sign to her all the different "play time" sounds she was hearing.  We are labeling labeling labeling....with sign and voice everything she hears...trying to build her vocabulary bank.  When it was time to go home Mrs. Kay took her back over to the regular room they work in.....We aren't sure what set her off, but she had a major melt down and missed the bus!  Mrs. Kay brought her home.....and when I opened the door and held out my arms for her....BIG SILENT CROCODILE TEARS......started rolling!   I just sat and held her for a while.....I asked her if she was sad.....SOB SOB SOB......I guess that would be a yes.  She is so brave, and so smart, and we are asking an awful lot out of her!  She is an amazing little girl.  She does so well....but she gets overwhelmed some days.  Sometimes it comes out in STUBBORNESS...sometimes in tantrums...but when its silent agonizing tears......OH MY HEART......it's tough.....so many times she is like a 5 year old going on 20....but in these tender moments when she lets down that tough shell.......we see and remember the baby girl she really still is.  The amazing little girl that's had to......up until 8 months ago......fight the battles on her own.  It's not been easy for her to give up that control to us.  I was worried that she wouldn't want to go back to school in the afternoon, but after sitting and letting it all out, she was back to her happy self.    Tuesday her note said...."Had a wonderful day.  She worked great. Went to Mrs. Betzs room and left from there with the preschool class."  So maybe she didn't want to go back over and leave from the other room on Monday??    Wednesday said.."Had a fair day.  Mrs. Betz and I did sounds ...she did GREAT.  Wasn't really interested in doing much else today...Got some things done"  Then today....was " Had a pretty good day."   So we are definitely getting more and more cooperation from her!  Yay!  Baby steps:)  She is becoming more and more aware of sounds around her too.  She will sign "hear" when a new sound happens.  Not every time...but more and more.

Iley...she is just her goofy little self....chattering nonstop...sometimes it makes sense....sometimes not.  Today she told me "you stay here, I'll be right back"  clear as clear.  Then.....  I was looking at some pictures on the computer and she was sitting on my lap looking too and she asked me a question... and i just answered mmm hmm.  She turned my face (by the nose)  towards her and said  "no no no...not say mmm hmmm ....look at Iley and talk."  Yes maam! ha ha.  Of course I would get busy doing my own thing and forget....and she would quickly remind me again.......NOT mmm Hmmm ....Talk!  She understands almost all of what we say to her, and as you can see is talking more and more.  Sometimes it's a little dutchy and hard to understand...she tends to leave off the consonants....like leese for please....noonles for noodles...she can say them right if we stop her and enunciate exaggeratedly.   Kyndahl just took the girls with her to pick up Thatcher from work......Iley told him..."we all pretty (indicating her, Wren and Kyndahl) you dirty!" 

They can both write their name now. And know most of their basic colors.  Iley can count to ten.

They are both sleeping all night......Wren mostly dry.....Iley almost never.  But we are thankful for pull ups....and it's a small issue.  They sleep from about 8:30pm to 7-7:30 am.  every once in a great while....they will make it to 8:00.  I know that sounds really late to some of you.....but to this NOT morning person..that's early:)

We are headed to Denver tomorrow to take Wren to a new audiologist.  We loved our old Audi, but Denver is closer....Troy does a lot of business there, and is much more willing to go with me that direction......we were thinking we would end up there eventually but had no idea where to go.....and then out of the blue.....we ran into a family from a town 30miles from us with a 5 year old girl with C.I.'s....that highly recommended this audiologist.....so... we are hoping that we love them too.  So far we have been impressed!  They have answered all of my emails quickly and have been very helpful. 

I think I've already posted this but if not....please pray for Iley........and the surgeon, Dr. Dearani.  She is scheduled for open heart surgery on Dec. 6th.  We thought it was going to be the 14th, but they called us right before Thanksgiving and said the surgeon wouldn't be there that week......ummm that's a bit of a problem!   The cardiologist we usually see won't be there for us on the 6th.....which is a bummer cause we really liked him, but the surgeon is the most important factor at the moment.  

That's all I can think of for now. 

Have a Blessed weekend!

Rejoice in the Lord always, Again I will say, rejoice!

Let your gentleness be known to all men.  The Lord is at hand.

Be anxious for nothing, but in everything by prayer and supplication,

WITH THANKSGIVING, let your requests be made known to God;

and the peace of God, which surpasses all understanding,

will guard your hearts and minds through Christ Jesus.

Philippians 4:4