Dressing up again...

I absolutely love Shaylee to pieces.  She is turning out to be such a fun "busy big bee".  She has such a great personality and she is so sarcastic sometimes driving me a little crazy but she makes me laugh!  She loves to have FUN all the time!  I had to keep snapping pictures because she wouldn't show her beautiful teeth.  I finally got a couple when she started to laugh!  She had a fun Halloween night with her friends!

I finally got a darling picture of Shaylee's smile with TEETH!  

Rylan was a cowboy again for the 3rd year in a row...I think?  He loves dressing up like a cowboy!  He seriously should be living in the country on a farm.  He loves animals so much and always is wanting chickens, dogs, cows all those fun smelly creatures.  He got some new cowboy boots this year thanks to a very sweet friend who took the time out of her busy schedule to go to the store and buy him some just before the Halloween Carnival.  He was so happy and it made his night and costume complete!

Cute toothless cowboy!  Yee-ha!

and for Amberly she wanted nothing to do with dressing up this year!  She wanted to pass out the candy and ride her bike with no training wheels!  I tried to change her mind but it didn't work of course...when she has her mind on something there is no way to change it!  She had so much fun it tuckered her out!  

We had a great turn out this year with tricker treaters usually we don't get that many but this year we got cleaned out!  There were some great costumes this year!  

HALLOWEEN CARNIVAL...

Last night was our Neighborhood Halloween Carnival!  What a hit!  It was well attended and my personal opinion it turned out great!  This year Shaylee is a Bumble Bee, Rylan is a Cowboy, and Amberly is Little Bo Peep.  I got home just in time to help with a couple of things and then to be with the kids for the night going to each booth.  I was overwhelmed with joy when I pulled up to see everyone working together to make the night a success!  I am so grateful for an amazing ward family who gather together to help make things happen.  THANK YOU!!!

 Brianna, Shaylee and Abbey having a great time together at the carnival!

GOOD NEWS...
Paige was extubated at 11:33 today!  I was so nervous to watch but stayed in the room and prayed real hard that she wouldn't turn blue and stop breathing.  She was ready this time and is doing well!   When I first got in the room this morning her eyes weren't swollen any more and they were open.  She is definitely on something because she is loopy!  She loves to suck her blue binky and hates the nasal canulas up her nose. She is still grinding those teeth but the binky sure helps out!  They untied her arms and I put her blanket up to her and she grabbed it and brought it right up to her face.  I love it!

Intubated

Extubated

Good progress...

Paige had a good night.  She had three really big poops!  Systems are a flowin'.  Good job Paige!  She was off the pacemaker all night and her stats were good through the night.  This morning they put her on decadron which a steroid to help decrease swelling.  They give this to patients to help get fluid down before extubation.  Good signs!  Her chest x-ray looks much improved from yesterday morning.  They are going to do a chest ultrasound just to make sure.  You never know with Paige.  It is always a waiting game around here.  They have to suction her three times each shift.  This is a double man team sometimes even three with how strong she is.  They put water down her breathing tube to help break up all the gunk.  It really makes her sound better.  I am so thankful they have the tools to do this because she can't move and so all the gunk just sits and collects.  She does have another pleural effusion but they are not going to put another chest tube in her left side.  They are going to watch her and slowly ween her from the breathing tube.  We are hoping she is ready this time!  The plan for the PA band is to watch and see how she does after she is extubated.   She is doing good today!

Paige with her cute little flower head band on.  It is so fun to see her with it on.  

Cute nurses Laura and Jamie...love them!

Things at home are good...Keith didn't have a call until noon so he took Amberly to the park to feed the ducks and a bike ride.  She learned how to ride her bike all by herself today!  She was so excited.  Keith said he took off the training wheels, Amberly got on her bike and off she went down the street and around the corner.  He couldn't believe it!  She had great balance and could even go in circles.  He was out of breath when he called me on the phone to tell me.  He was so proud of her!  I couldn't wait to come home and see her ride her bike.  She called me and told me over the phone.

Up and down...

Paige had her third open heart surgery on Saturday.  We got word from Dr. C that everything went ok except when he tightened the pulmonary band he almost lost her several times.  The last couple days have been up and down.  She is stable...that is great!  Keith has been here since Friday night and I switched him places today.  We both have so many things going on but seem to be managing quite well.  I am so thankful he has been able to be here with Paige.  I have truly enjoyed being home with the kids.  Life is crazy!  Last night around 5:30 pm Keith called me and said Paige quit breathing.  He was sound asleep on the bench and woke up to 8 people working on his baby.  He was very nervous and was still half asleep.  He thought it was nightmare.  I grabbed my purse and keys and out the door I went.  I have no idea how fast I was driving because my speedometer is broken and it said I was going 60 miles per hour so I believed it and kept passing all the cars.  When I got there she was doing ok and was intubated.  Her body was just not ready to be extubated.  Keith and I had a good cry and talked and talked about Paige.  We are so sad she has to endure this pain.  It is so hard to see her this way.  This is the hardest yet!  Her face, neck, eyes, hands, fingers are so swollen.  She is going to win this fight!  We had a good snuggle and watched a movie Devil Wears Proda...it was funny.  I left around 10:30 pm...thanks to the Shepherds and Carol again for taking care of my kids!  Oh and Shepherds got the cutest little puppy.  My kids don't miss me they now have new entertainment.  Today she had an echo and she has a left pleural effusion and the bottom of her left lung collapsed.  A pleural effusion is an accumulation of fluid between the layers of tissue that line the lungs and chest cavity.  This is what Paige has had for 4 weeks.  This is why she has had to have 4 chest tubes...we are praying the fluid doesn't build up too much.  If it does another chest tube will be put in but they may be able to drain it with a needle tomorrow at 2:00 pm under CT Scan.  If they do this we hope it will completely drain and then the swelling will go down and then we extubate her and then she gets better!  That is our plan!  The great news is the pulmonary veins that were repaired on Saturday look fabulous!  The PA band is still needing some attention but we are making progress very slowly!  She is eating through feeding tube and tolerating her feeds.  That is good.  She has a gassy belly so things are working good inside.  We just need her to pee more so the fluid will go bye bye...I am really hoping this happens soon so I can see her beautiful big eyes!

Paige started to grind her teeth.  It sounds horrible!

Paige's Surgery...

Well it is Saturday and Paige is having surgery right now!  It is 3:15 and we got word that everything is going good.  We are waiting for bleeding to subside so that they can zip her up.  Rylan had a piano recital today at the Superstition Mall.  He was 5th on the list to play but when it was his turn he got soooo nervous so the recital kept going.  I talked to him and asked him if he would like me to play the duet with him.  His eyes lit up and he calmed down and we waited until a few more students performed.  It was finally his turn and when we sat on the piano bench I started to get nervous for him.  He practiced and practiced and had it perfect at home...no mistakes but when you actually sit down to perform in a big mall you get really nervous.  His poor little hands shook and shook and so did mine.  He did a super great job for his first piano recital!  He was so excited to go and see the cute little dogs in the pet store.  He fell in love with the cutest little bunnies.  I took the kids home and got things under control and off to the hospital to wait for Paige to come out!

This is the ANGEL bandage that the nurses and doctors made to cover Paige's incision.  It was so  precious!

 My heart and soul were GRIEVING!  I cried all the way home and all night!  My poor baby.  She has no idea what she has been through...three open heart surgery's by 9 months old!  

Rylan lost a tooth...

Rylan has only lost four bottom teeth.  He kept asking me when he was going to lose another tooth and why everyone else was.  Finally his top right tooth started to get a little wiggly.  He has been working at it everyday to get it a little looser.  About a week in a half ago he decided that it was time.  He wanted Keith to pull it out.  He first tried with his fingers but it wasn't working out very well so he pulled out his pliers.  I couldn't believe Rylan let him even get close to his mouth with those things.  Keith tugged and pulled and we all heard it and then all of a sudden POP!  It was out!  He wouldn't smile for me at first but then as soon as the bleeding slowed down he gave me a big toothless SMILE!  I laughed out loud cause it was soooo cute!  What a BRAVE BOY!