Sweets for my Sweet :: Ballet Performances

Get into the Groove Showcase

:: candyland::

West Minico Practice Performance

 



Lollipop, Lollipop :: Tap

Get into the Groove Showcase

 :: candyland ::

 

 

West Minico Practice Performance

 

pumpkin patch!

 

It really isn't fall without a trip to the good ol' pumpkin patch! And it just so happens that this country town has the cream of the crop! I can remember coming to this VERY pumpkin patch with my family when I was a little girl and it's one of my favorite fall memories.  We lucked into a Saturday with [perfect] fall weather and LOVED spending a good chunk of our afternoon picking pumpkins!

Last year Leighton was so little she didn't get to experience the glory of big orange pumpkins!  She loved it this year!

 

love these two.

they keep me on my toes

and especially [thankful] each

and every day.

 



Kashton was like a kid in a candy store! So much to look and and SO MUCH to do! It was nice to have an ENTIRE field for him to run like a little banshee thru.

 

Fall is my favorite.  By far.  So glad I get to make such fun memories with my family!!

Soccer

 

Jackobi was so excited to play soccer this fall! She begged to play, so we decided to let her give it a try.  We quickly learned she didn't love it.  Or even really like it. [obviously shown in the picture below] She loves to kick the ball in the yard when it's just us, but when there's a large crowd, she'd rather stand as far from the action as possible.  "I don't want to get kicked" she says ... can't blame the girl.  She did find another friend, Jett, who was as disinterested in the soccer game as her, so they made quite the pair playing with each other as far from the ball as possible.  They actually became quite fun to watch.  Where soccer didn't go quite as we had thought, by the end of the season Jackobi came out of her shell a bit. She wouldn't full on play, but did manage to participate a bit.  My favorite part of the season, was after their last game.  All the players got medals, and in the car on the way home -- she told how proud of herself she was for sticking it out and not quitting.  We are too!! It was a fun season of soccer! [and quite possibly the last for Miss Jackobi ... she says we should just stick to dance!]

 

a [little] Kashton update ::

Kashton Tate :: this little guy sure makes us [smile]  He is firey with a ton of personality and very sure of what he wants and likes.  He has always been quite the talker and is still very much so.  He tells us just what he's thinking and has quite the conversations!  He's gotten really into imaginative play and loves to play make believe.  He loves trucks, motorbikles (aka:: motorcycles) and tractors and anything that makes a loud motor noise! He still really loves baseball and playing outside.  Especially helping daddy shoot his bow or guns (he calls it "snapping" it.)   His favorite color is red (most of the time) ... and loves to be my helper.  He is all boy and generally really rough and tough, but in the same token is my sweet boy who gives lots of snuggles, hugs and kisses.  Oh and he has a head full of curls that are to die for!  He is our silly little comic relief most days full of mischief and energy.  I really don't know what we'd do without him! He's growing up so fast!

[confession]

A couple of weeks ago we found out that Leighton's surgeon [amazing surgeon might I add] was moving back to Boston.  The head of one of the organizations we're a part of was putting together a book for him as a token of appreciation - she asked each of us to submit a couple pictures of our "heart hero's" along with some surgery dates and a little note for Dr. Kaza.  We jumped at this opportunity -- what a neat idea. [the end result is amazing, might I add.  Talk about a book full of MIRACLES!]  However, I must admit, in looking for photos of Leighton I became a little disappointed in MYSELF for the lack of record keeping the last well ... um year! So :: here it is.  Re-commitment from me.  To do better.  I'm going to try and update my blog once a week :)  so they may be short - filled with trivial happenings of our lives, but I'd rather have that to look back on and smile than blank pages.  So ... here goes nothing~

Jackobi's [pre-school] Graduation ::

 

Jackobi graduated from pre-school and we couldn't be more proud of her! We're excited for her adventure in Kindergarden next year. She did really well in pre-school. It was so fun to watch her grow, learn and blossom throughout the year. She became quite a bit more social and had so much fun learning.  She made new friends and loved doing fun little projects.  They made the cutest ABC book throughout the school year.  It's fun to look thru and see just how much she has progressed since they started this fall.   Her teacher Andrea did such a good job mixing learning with fun activities. She really made each kid feel special and unique! Jackobi loved her.

:: recital season practice ::

Jackobi's dance class had a practice performance this week -- they were so cute dancing up on stage.  She really loves to dance and we love to watch her! 

 

[six months old] :: and :: three weeks post op

 

I can hardly believe Leighton is six months old already!!  She is such a sweet happy baby and will greet you with the biggest slobbery little smile and happy blue eyes any time she sees you.  She really is such a sweetheart and HAPPY! She's definitely a mama's girl and doesn't like it very much if I leave the room.  She loves to be snuggled and chews on anything and everything.  She has her two bottom teeth now and seems to be working on getting a couple more.  She is super interactive and loves to play and "talk".  She loves to play patty-cake and watch me and Jackobi dance silly for her.  Last week the weather was so beautiful, we were able to take her outside for a little bit and she absolutely loved it.  So curious and excited. She has found her toes and loves to play with them and chew on her feet when she can get them to her mouth.  She is growing so well and is towards the top of the charts in both height and weight. She loves her cheeks kissed and tummy tickled.

 

Yesterday was her post-op appointment in SLC and it went really well.  Her EKG and chest x-ray came back good and things seem to be healing nicely.  We monitored her for a bit both on and off her oxygen and her saturation levels are still on the low end, too low without her oxygen so we will be sporting her oxygen for at least another month.  She was sat'ing in the low 70's off her oxygen and we want her in the mid 80's.  So hopefully after another month we'll be able to kick the oxygen tank just in time for summer! :)  She no longer has to be on a constant "flow" of o2 which is nice.  We are able to take her off for an hour if we want to go outside "cordless" or take a quick ride in the car, so that's nice!  Yesterday she was able to have her first real bath since surgery (her incision has healed) and were able to do it without her oxygen on, so that was a treat!

We are still seeing so many blessings in her recovery and continued health, she is truly a miracle!

:: one week post op ::

 

It's hard to believe it's already been one week since Leighton's surgery.  We've been home for two days now and are making some adjustments.  Leighton is doing really well, she's sleeping better, eating better and having fun playing with her toys again.  Life really is just better at home!  We're still working on pain meds. trying to stay on top of her discomfort, but not just give her medicine around the clock.  She is also taking asprin daily to act as a blood thinner and will remain on that, as well as, her lasix prescription.  I can tell she's feeling so much better, but still needs to rest lots and just let her body heal.  Jackobi and Kashton are really glad to have her home as well! Kashton thinks her oxygen machine and tanks are pretty neat (we're having lots of "fun" teaching him to leave them alone).  And Jackobi is still our good little helper making sure she's always being played with and has her toys.  It feels good to be back together :)

:: home we go!!

[[day five]]

 

 

[someone] was all smiles today!!

 

The change in Leighton's mood and demeanor today were evident! She was acting more and more like her typical self as the day went on.  She was awake lots and super playful.  She even flashed that smile at all the Dr's at rounds this morning and the nurses throughout the day (they have been getting glares in previous days :))  She seems to be eating much better also and her O2 is on point.  She's down to 3/4 Liter on her Oxygen so that's really good! (anything above a 1 and you have to stay here :)).  The scale will be the big determining factor in the morning, so let's hope those chubby legs are storing some of that food she's eating!

 

day four ::

 

Our little lucky charm on St. Patrick's Day! I've never been one to celebrate this holiday, but they sure try to take care of everyone here. For the older kids they had little green baby leprechaun footprints and "pots of gold" periodically spread throughout the 3rd floor for a little treasure hunt and made rainbow crafts. It's pretty neat how much they try and create a sense of normalcy for the children who are here. We even had to sneak a little green bow on Leighton so she wouldn't get pinched. 

Leighton had an okay day.  We did get her first smiles so can tell she's starting to feel better, hooray! We missed that slobbery grin.  But she's struggling to eat and loosing weight.  Her admittance weight was 8.4 K and was down to 7.82.  We're working on getting her to eat [and go potty] :: and for the first time we have a written order of how much intake she needs to get.  She has loved to eat in the past (hence the rolly arms :)) so hopefully once she starts to feel better she'll decide to eat better.  We've also had to chase her oxygen saturations a bit.  Since she came out of ICU she's been consistently sat'ing in the high 70's and low 80's, but this afternoon was dipping into the 60's and low 70's.  We've turned her O2 up 3L (liters per minute) and are trying to find her new normal. Hopefully we can figure it out tonight and tomorrow.  She did have an echo and chest xray this morning that both came back good.

Once we figure out her O2, weight gain will be her ticket home! Hopefully in the next few days. :)

day three ::

 

It's amazing to me how resilient Leighton is!  Today, overall, was a good day.  It started out a little rocky, she had to have her labs drawn [not fun], then re-drawn less than an hour later [really not fun].  She's a hard stick when it comes to blood draws, even when they send their best from the IV team.  So we kind of dread them.  Even more than her blood draws - she hates, HATES taking her tylenol orally.  Kind of ironic since it's probably the easiest [and tastiest] med she takes.  She literally chokes it down, we can't believe how b.a.d. she hates it.  Hopefully she gets used to it because it's the only pain med you go home with! After a waking up at 4am for labs, x-rays, vital checks and yucky tylenol - this little chick was quite frankly not a very happy.  We felt so bad for her! Her little eyes would look at every person that came in her room nervous they'd "do something" to her.  Luckily, kids forgive quickly :)

We're happy that her chest x-ray came back good and the drainage had gone down so we were able to remove her chest tubes [[YAY]] :: that's pretty painful, but she has be oh so much more happy since.  She can move more freely and even tried to "play" a little this afternoon.  We were able to hold her and snuggle on her a little.  It felt good to be able to love on her!  We are seeing such a huge improvement in her disposition and behavior, I can tell she's starting to feel lots better. :)

***

 



[day two] ::

:: look who made her way out of the CICU today? This little sweetheart!!  

 

Leighton had a good day today.  She is awake more often and very alert when she is.  Her little hands have gotten curious and she likes to try and pull her oxygen out of her nose just about every chance she gets.  I have a feeling socks on her hands are in the near future :)  She still has two chest tubes in for drainage, which probably make her pretty uncomfortable, but hopefully they can come out tomorrow sometime.  We're so amazed in the changes we've seen in her disposition and recovery over the last day. What a miracle it is for her to be recovering so well; prayers are being answered. 

Leighton's Surgery [night one]

Leighton had a really good night and has had a good morning so far. We're on top of her pain and she was able to have a bottle this morning so that seemed to help.  After surgery she was on some meds for high blood pressure and other various things, we've been able to wean her off most of those and are getting her off of morphine. We're using oxycodone and tylenol to manage her pain now. She received her first dose of asprin this morning and will continue to take that until her next surgery years down the road. Her mood much better and we've got to see her sweet eyes more today. If all continues to go well, this afternoon we will be able to remove the pace wires from her  right atrium (we've been monitoring pressures since surgery) and her central lines.  Keep it up Leighton, you're such an amazing little fighter!

Surgery Update :: [day one]

Leighton has been beyond amazing today. We checked into the hospital at 6am and her surgery started around 7:30am. She had to stop eating by 3am so we were a little nervous she'd be hungry and crabby, but she was a gem. So smiley and happy. Surgery took about 5 hours, so she did well! She was on bypass for 55 minutes and they did have to stop her heart for 13 minutes while Dr. Kaza (her beyond amazing surgeon) over-sewed her pulmonary artery that is now detatched from her heart. She came off bypass well and even came out of surgery breathing on her own (which isn't always the case) we're proud of our strong little girl!

She's in the CICU (cardiac ICU) recovering now and doing pretty well. Her stats are right where they should be. From 1:00-5:00 she was pretty irritable (rightfully so) and it's taken us until now to get on top of her pain. She had a rough time coming out of anesthesia & I think that's where a lot of her discomfort came from. She moaned and cried pretty continually for the entire 4 hours and there was absolutely nothing we could do to help her. It was heartbreaking. Hopefully she continues to rest tonight so she can heal and the stitches in her heart don't become too stressed.

We again are so grateful for all the love and prayers being sent out way. We have been blessed ...

Glenn Shunt :: Leighton's [second] surgery

This is the best picture I could find explaining the surgery Leighton will have tomorrow.  Ignore the green #3 and #4 :: we're just focusing on the green #1 and #2.

 The superior vena cava is removed from the heart and connected end-to-side to the right pulmonary artery, which is in continuity with the left pulmonary artery. The main pulmonary artery will be separated from the heart and oversewn. 

#1. The lower section of the pulmonary artery (this is where her PA band was placed in November) that should carry oxygen-poor blood into the heart is removed.

#2. Oxygen-poor blood coming back from the top half of the body is diverted directly into the lungs instead of flowing back into the heart before going to the lungs

[I'm pretty sure I could rock Anatomy class now :: at least the heart section ... ]


Leighton had a big day of pre-op yesterday.  We were at the hospital for over 10 hours and the hotel pillow never felt so good when we finally got done.  One of the big procedures she had was heart catheterization.  She did so well.  We used this procedure mainly used to check pressure levels and o2 saturation levels & get a better picture of her heart.  She also had a sedated echo.  She did amazing thru the entire procedure.  Her results basically confirmed things we already knew.  Dr. Gray said as great as everything looked -- it was time for the next step (meaning her Glenn).

Afterwards recovering :: all smiles from this girl :: she's the best patient ever!

We check into the hospital at 6AM tomorrow morning ... thank you everyone so much for all the love, support and prayers.  It means so much.  We will try and keep you posted as soon as we know more!