Countdown to Fontan

For those who may not yet know, Jack is scheduled to have his next heart surgery, the Fontan, on May 3^rd.  That is just 3.5 short weeks away. Yikes!  We’ve had several opportunities to talk with Jack about how he will be going to the hospital soon so the doctors can fix his heart, but mommy and daddy will be there with him.   I mentioned that he will have to get some pokes and “owies”, but he will get some presents and treats while he is there and he looked at me and said, “My tummy hurts. Let’s go to the hospital.”  We’ll see if he’s still so enthusiastic in a few weeks. 

This week we will be heading up to the hospital for a pre-surgery class. He will get to see the OR and learn more about what is going to happen.  Hopefully that will go well. Then next week he is scheduled for a heart cath to get some pictures of his heart and check to make sure the pressures are where they need to be so he can have this surgery.   

We feel very blessed that Jack is doing so well going heading this surgery, but it is days like today when he needed a break half way through his Easter egg hunt that I am reminded that he is not like other kids and that he is ready.

   

Giant Easter Bunnys

Jack's cute cousin Ally came to visit a week or two ago over Spring Break.  She and Jack are best buddies.  While she and her mom were visiting the new City Creek Center they stopped in Rocky Mountain Chocolate Factory and saw a giant 3 ft tall, 25 lb chocolate bunny they were giving away.

Ally entered to win and put that she wanted to win it for her cousin Jack who was about to have open heart surgery.  Guess who won!   Rather than drag the poor giant bunny around for a few weeks, they decided to take the bunny up to Primary Children's Medical Center on Friday in Jack's name so they could have it for Easter.  They gave a couple of smaller bunnies for Jack and Ally to eat at home.

Here is Jack enjoying his. I'm pretty sure he would have eaten the whole thing tonight if I would have let him. He kept saying "Mom, I'm starving! I need to eat my chocolate bunny."   Thanks Ally and thank you Rocky Mountain Chocolate Factory!



Happy Valentine's Day

Fun with pom-poms

I bought a bag of pom-poms at Target for $1, so yesterday we pulled them out for some fun.  Jack sorted them by color, and we played a game where we tried to drop them from way up high into the jar. (Hurray for Pinterest and people with fun ideas to share.)

Tyler thought they were great and laughed and giggled, only occasionally putting them in his mouth for a little chew if I could keep Jack from stealing all of them.

 He's so cute.

I finally lured Jack away from stealing his brother's pom-poms by letting him make cheerio towers on a piece of spaghetti stuck in some playdoh. So fun. (Yay Pinterest. Thank you for helping me entertain my children.)



Disneyland!

A week and a half ago we had the fabulous opportunity to go to Disneyland.  We had the BEST time. Jack thought it was pure magic and now asks everyday if we can go back.  Ty was happy as long as he had a hoodie string to chew on. And the cute blond in the photos (besides me :) is our niece Ally who came with us and helped entertain the boys. If her parents would let us, we just might keep her. Jack was devastated when he learned she had to go home. So. much. fun.

Catching up

I'm so behind on blogging...and everything else.  How can these two angel faces keep me so busy?



 A few weeks ago we invited some friends over and we painted pumpkin jars. That was fun.

 Then we went to the Red Barn in Santaquin for the IHH party and we got to take a hay ride out to the pumkin field.

 Jack dragged us everywhere until he found the "perfect pumpkin."

 We had a Halloween Party at my sister's house where we played "pin the face on the monster..."

 And wore our costumes...

And bobbed for apples

 Here's Doctor Jack on Halloween night getting ready to trick or treat.

 And my cute Bumblebee Tyler

 Here's Jack about 30 seconds after he got home from trick or treating.  He loved trick or treating once we met up with some of his friends, and he got so much candy that he thankfully forgot about by the next day so I picked out the stuff I like and kept a few tootsie rolls since I know he likes them, and I threw the rest of it away.

 Last week we went to Discovery Gateway Children's Museum.



That's a few of the highlights from the past few weeks.  Now we're just counting down until Disneyland!

I will go, I will do

Superheroes and Witches

On Tuesday we met up with some of our Heart buddies at Gardner Village to look at the witches. We had the boys dress as superheroes, since that's what they are.

  

   

My sweet boys



Even Bumblebee Tyler got in on the action.



Our Heart Heroes
Jack, HLHS - Teagan, HLHS - Thatcher, TOF - Gator, HLHS

Ty decided he likes older women, and she sure liked him.

Utah State Fair

On Wednesday we had the opportunity to go to the Utah State Fair with HopeKids.  We invited his cousins to come play with us and had a blast!  We got wristbands tht let us go on the rides for a few hours and Jack thought that was fantastic.  We were so busy riding and having fun that I didn't even pull out my camera, but trust me, there were lots of smiles.   



There was a crazy guy who dressed up his geese in crazy costumes and he let Jack his one a drink of Mountain Dew.

We walked into the cow barn about 1 minute after a cow had given birth.  That was kind of amazing. 

 We saw some huge pumpkins.

 ...and some fluffy bunnies. (Jack thought it needed a snuggle.)

As much fun as he had on the rides and seeing animals, he spent much of his time playing in the dirt and taking off his shoes.  We went through a lot of wipes and hand sanitizer.

 They had a great hands on farm experience,

And we even caught a glimpse of the prophet.

Such a fun day.  Too bad I didn't pull out my camera more often.

Sedated Echo

This morning Jack had a sedated echo at PCMC.  We had to be there at 7:15 a.m. so it was an early morning for all of us, but since he couldn't eat anything before his echo it was nice to not have to deny him his morning milk for too terribly long.  He was not a big fan of the IV, but I couldn't blame him since I think they really hurt too.  But the IV team gave him a stuffed ghost and that helped immensely. He's snuggling with it now.   Once he got some meds in his IV he was all smiles and punch drunk.  Pretty funny to watch.  He was zoned out for a while, but woke up fairly quickly after he was done so we got out of there in good time.

We met with Dr. Puchalski and he said everything on his echo looked great.  His function was really good and his valve is not leaking at all.  Such awesome news.  His sats through the proceedure were in the mid 80's, so it's hard to complain about that.  They did notice something around his aortic arch which is causing some gradient from his upper to lower body, but it's not major.  If they need to they should be able to fix it in the cath lab in the future.  Dr. P said that we can move forward right now with his Fontan prep and schedule a cath followed by surgery, but he also feels very comfortable waiting 6 more months. Since Tyler is still so small I think we're going to aim for that.  He's not loving the bottle at the moment and no Grandma wants to be left with a cranky hungry 3 month old, no matter how cute he is.

We feel very blessed by this news. Jack really had us worried for a while there by how tired he was, but I guess it was a weird bug that had no other symptoms other than to wipe him out half the summer.  Then he got a weird bug that had no symptoms other that the occasional puke.  Now he's all better and is perky and silly and drives us insane half the time with his 3 year old antics.

Days like today are kind of long and yucky but are good to remind me how precious my boys are, even when they are into trouble. So to celebrate tonight we are going to eat pizza and let Jack guzzle all the milk he wants and watch Little Einsteins and Bubble Guppies to his hearts content.  Good times.

Tummy trouble

Sigh...It's been an exciting morning.  Jack woke up crying at 6:00 a.m. so I let him come snuggle with me in bed. A few minutes later he started coughing and wham! He puked all over me, him and my bed. Awesome. So I threw him in the tub, stripped the sheets, got him out of the tub and let him watch a show while I jumped in the shower to clean off the vomit. When I got out he said he felt good, then threw up again all over my bed, so we did it all again.

Normally I would just assume stomach bug, but he threw up Sunday (in nursery) and about a week ago in the middle of the night as well.  Every time he throws up and doesn't feel well for a little bit but then perks up and is fine.  No other symptoms.  Then a Heart Mom mentioned her daughter was throwing up too and cardiology was concerned as vomiting can be a sign of heart failure. (Plus his other HLHS buddy Kylie got sick a few days ago and is now in the hospital really struggling.) Of course that got me worried so we've spent the day at the dr.  First stop was the pediatrician. He's lost some weight, but otherwise looks pretty good. After consulting with cardiology they decided we should go get a chest xray just in case.  Thank goodness for the Riverton PCMC office.  Jack was a trooper and we were in and out in 30 min. The pediatrician called a little while ago and said everything looked okay, so we're back to assuming it's just a weird stomach bug.

Sweet Jack has definitely been slowing down lately.  His cousins run circles around him, and at his bday party he sat in the shade while his friends played the games I had prepared.  We called cardiology a few weeks ago about it and we have a sedated echo scheduled for September 12 to see what's going on. My guess is that we are getting closer to needing the Fontan.  As a result I pulled him out of preschool for next year just in case. He would have loved it but some days he just doesn't have the energy.  We'll have more answers in the next few weeks, but as of today we at least know he's not in heart failure so I don't mind a little vomit.  Now if he would just learn how to aim for the bowl.

Happy Birthday Jack!

Three years ago this little boy and his very special heart changed our lives.  How grateful we are for him.  He is smart, charming, gentle, sassy, funny, polite, stubborn, creative, snuggly, naughty, loving, and hilarious. 

We love you so much Jack!