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! 

Keeping busy

We're still just bummin' and enjoying our summer.  A few weeks ago Hardy and I took the boys to Red Butte Garden.   Jack ran every where and Tyler slept through it all.

We went with Jack's best buddy Caroline to the Aquarium.

Last weekend we went with some friends to Park City.  Here is Jack, his buddy Paisley and their dads going down the Alpine Slide.  We haven't done that in years.  The kids LOVED it.

And this little cutie usually just sleeps through all the fun as I drag him all over the place, then wakes up ready to eat.  Both boys just had their Wellness check ups and both are 50% for their weight and doing great.  

We've been playing so hard one day Jack just fell asleep at the dinner table mid-meal.  Actually, he really is slowing down these days. I've been noticing a difference in his stamina lately so tonight I checked his sats and they were 74.  That's a big drop from 82 where he was in May.  It's to be expected and is his body's way of telling us the Fontan (his next surgery) is getting closer, but I hate to even think about it. 



Brotherly Love

Tyler is a little over 3 weeks old and already these boys are best buds.  Jack's favorite thing in the world is to lay with his brother on his playmat which Jack has decided is a spaceship.    He gets so excited any time Tyler looks at him or holds his hand, and he's constantly asking to snuggle with him. He's so gentle with him, and only once has he thrown a fit and refused to let me hold Tyler.  I've been really proud of how well Jack has adjusted to not being the center of the universe.   

This past weekend we took the boys to the South Jordan Country Fest.  We let Jack go on a few rides at the carnival and he was in heaven.  I can't wait to take him to Lagoon in a few weeks when he can go on the rides as many times as he wants.  

So, so sweet.  I love these boys.

Big Brother

Look at that face!  Jack is a HUGE fan of his new baby brother Tyler.  He almost wouldn't let Grandma and Grandpa have a turn holding the baby and just kept saying, "Awww. He's so cute" while giving him sweet hugs and kisses.  Good thing Tyler was born big and sturdy (8 lbs 6 oz) so he can handle some good brotherly love.

Jack is now going to spend the holiday weekend with his cousins at my parents cabin in Heber while Hardy and I stay home and figure out what to do with a newborn since we've never really had to care for one as Jack was 3 weeks old before he came home. What a huge difference this labor and delivery has been from what we experienced with Jack. This little guy arrived just 2 short hours after they broke my water. He's pink and healthy and we've spent the day snuggling and trying to figure out how to eat. It's been a delight and so much less stressful.  We can't wait to see what tomorrow brings. 

Jack's Crazy Kitchen

This weekend I got the “Awesome Mom” award.


On Saturday morning Jack woke up and the first words out of his mouth were, “I want to play with my kitchen.” He was shocked and sorely disappointed when I informed him that he does not have and has never had a kitchen. I don’t know where he got the notion that he did. Thankfully Hardy distracted him with some good morning yard work, which Jack absolutely loves, but a few hours later Jack was requesting his kitchen again.

Lucky for Jack I was having a rare burst of energy and I recalled an article in Family Fun magazine a few months ago that showed how to make a kitchen out of boxes (I even managed to find said article without much effort). So a few random boxes, some duct tape, and about an hour later and Jack now has his very own kitchen. It has a sink and faucet, stove top, microwave, upper and lower cupboards, and eventually will have an oven when I can bend over again. It’s kind of crazy, but thankfully the audience isn’t picky, and maybe, just maybe I’ll invest in some spray paint to fix it up nicely. Not this week though. I’ve got a baby coming in 3 days. In the meantime, Jack loves it.

I’m totally giving myself a pat on my back for creating this, especially at 9 months pregnant.

My Little Letter Lover

It's long, but he's brilliant. What can I say? Some kids carry around blankets or stuffed animals. Jack carries around a foam letter E (his favorite). Crazy kid.

Cardiology Appointment

Yesterday Jack had his semi-annual cardiology appointment. Thankfully it went fantastic. His past 2 check-ups have involved him screaming the entire time ‘til he cries himself to sleep in my arms so Dr. P can listen to his heart. But finally he seems to be old enough that it went much, much smoother. He cried a bit during his x-ray, but then he held still and listened to a story while getting his blood pressure and O2 sats checked. He helped the nurse count the stickers as she put them on his chest for his EEG and told her the colors and letters on each of the “noodles” as she attached them to the stickers. We played with bubbles and ate M&Ms to keep him happy and entertained as Dr. P listened to his heart. The nurse even said he was her easiest all day. I had heard rumors that appointments would eventually get easier, but I finally believe them.


The best news is that Jack looks fantastic. His o2 was 83-88 which Dr. P was even impressed by. I got the impression that he was kind of thinking we’d do his next surgery, the Fontan, this fall, but looking at the numbers, his best guess was that early next summer would probably be a good time. We like the sound of that. How nice to have another normal year without the stress of pending surgery.

Just 4 more weeks until Jack’s baby brother arrives. He is getting very excited and keeps asking if he can have a baby. Sure thing – I’m working on it. Any time I groan because of a big baby kick Jack will run over and kiss my belly. Very sweet. I think we’re all ready for this little fella to make his appearance any time now.

The nurse asked Jack to help her put on the "noodles" (wires) so he put one in his mouth.

Look at those cute big muscles

Catching bubbles