Cardiology appt.

Kindergarten School Picture :)

Miss Maddie had a her cardiology appt. last week in Seattle. Bryan, our niece Savanna, Maddie and I made the quick trip over and back. Savanna and her youth group sewed blankets for the cardiac babies so she came along to deliver those and see what her cuz does at her appointments.

Maddie has become such a cardiac patient pro, laying quietly for 45 minutes during her echo so the tech can get pictures of her heart, being helpful putting on and taking off the EKG stickers and leads, and holding very still during her blood pressure and sat checks. It wasn't always this way, between ages 9mo-3, I felt like I was at a circus, trying to keep her attention, keeping her still and helping to keep her calm and distracted during these tests and procedures. Makes me tired and sweaty just thinking about the antics I'd do!

Our girl is still growing like a weed! Never in a million years would I have guessed she'd be in the 90th percentile for growth. She is a healthy girl, our prayers have been answered. Her sats were 92% and blood pressure 90/65...both great for her. Dr. Chun reviewed her past echos to compare a new finding, which we're still unsure whether this is a "fake-out" on the pictures or if its really there. Her echo pics were very clear which was a bonus. It appears that Maddie's developed a couple of "jets" at the base of the tube and her IVC. He reassured us that scar tissue is holding everything in place and is guessing that a couple of the sutures which connects the shunt could be loosened and blood is able to leak or shoot out in those areas instead of flowing up the tube to her lungs. I actually noticed it during the echo...alarming to see but more so to hear about.

Dr. C has always laid it all out there for us, never holding anything back. I appreciate his honesty and willingness to share the "not-so-good" stuff about her heart but it takes me a bit to process it and after an email to him with more questions and a week and a half has passed by, I'm ready to post about it. He also said the pressures are up in her Fontan side, doubling from her echo in May (went from a 3-4 to a 8-9). From the echo, her PA's look great, she's still dependent on her fenestration, so why the pressure increase? Who knows...my theory is her extremely fast growth has pulled them loose, but that's just my theory. We don't know why or the specifics of this, further testing is needed. I pray its just a false alarm on the echo. As of now, her Fontan continues to function well and we'll focus on that. He mentioned a cath or cardiac MRI in the future would be our best bet in investigating this. So we're still on a 6 month pass. Dr. C wants to keep watching this and reiterated that if we see any changes in her (lower sats, activity level, her color) to call right away and he'd work her in to be seen.

I continue to learn so much through this journey. Fear creeps in often and I find myself praying more lately for comfort and protection over Maddie's heart. I'm so thankful she's done so well, but there are days that I'm waiting for the other shoe to drop...and this is no way to live. I am not a good mother or wife when I'm in this mindset. I'm distracted, short-tempered and negative. So when I find myself in this mood and way of thinking, I choose to be grateful and to trust in Him. I try to focus on "right now" instead of borrowing trouble and worrying about something I have no control over. I do have control over how I handle this and what I consume my mind with. Most importantly, I want Maddie to have an example of strength and reliance on His promises. She lives with this and I pray she can live courageously and with trust in the One who made her this way. 

"Don't be afraid, for I am with you. Don't be discouraged, for I am your God. I will strengthen you and help you. I will hold you up with my victorious right hand." - Isaiah 41:10

First Day of School!

3/4 of our kids are busy at school! Jace (4th grade) & Caden (2nd grade) started school on August 28th while Miss Maddie had an interview with her teacher that day but didn't begin her days at Red Rock until Sept. 3rd. Sam's really missing his big brothers and sister.

The boys are enjoying school and doing well! We jumped right into a busy schedule of activities...Grid kids football for Jace and Soccer for Cade. Their first games are tomorrow, at the same time, different cities. Go figure. 

How can this little girl be in Kindergarten already? When she was a baby, this was something I never let myself think about. Kindergarten seemed worlds away and it felt impossible that I'd send her to school someday. We're here now. It's humbling, amazing and such a blessing to be at this point.

 She LOVED her first week of school and has been so excited to go each day... I've shed my share of tears, just accepting this change and letting go. Luckily, we're "easing" her into the full-day of Kindergarten so I've been able to pick her up at 11:30 each day this week and still get some quality time with her in the afternoons. She has napped the past two afternoons and woke up stuffy this morning, she's getting more congested as the day goes on. Yucky germs already :( 

Maddie with Mrs. Wood and Mrs. Raigoza. These two are awesome and have been so helpful in accomodating our girl and making this transition as easy as possible on all of us!

Cousin Jilly and Maddie on their first day of Kinder! I'm so excited these girlies are in the same class.

Her favorite part of school so far is "going outside" (aka: recess)...she comes home each day sharing that she has a "new best friend" but can't remember her name. Cute. She's also so excited when she sees Cade in the lunch room, always excitedly sharing every detail..."he yells to me, Maddie! and comes to my table and gives me a big hug." I've loved picking her up each day as she chats all the way home about her day, giving me Kindergarten low-down! She's growing up!



A tea party on the ranch

My mom (aka Nany) has always wanted to host a little girl's tea party so she planned this very fun day for her two granddaughters, Maddie & Kylie, and their little friends. It was a rainy June day on the ranch so the plan of having it outdoors had to be altered to an indoor tea party. All 6 of the girls dressed up in their prettiest dresses and pearls while they enjoyed tea with the girls. The girls had an audience...a few grandmothers and great-grandmothers were also there to enjoy the day. Mom had her close friend, Robyn Green come and take pictures to capture the sweet affair. I think that the pictures depict the lovely day the girls had... thank you Nany for these precious memories!

Sammer Jammer

 Oh this boy is busy! Go, go, go is his game...he has a temper, he's thrown a few tantrums lately and he's a binky lover (we're working on this.) Our baby is definetly the baby...getting what he wants, when he wants it. Sam is a joy and provides us many hours of entertainment. We can't get enough of him or his cuteness!!!

boys & baseball

These two LOVE baseball. They eat, sleep and breathe it. Literally. So much so that when I went downstairs to check on a crying Sam at 3am I noticed the light was on in their bedroom...when I walked in, they were both in a deep sleep on their beds, covered in baseball cards and wearing their baseball gear still. Apparently they'd ignored my request to put on their jammies!

Bryan is a wonderful coach/dad that spends hours with them batting and fielding in the backyard. They are constantly bringing his mitt to him, requesting to play catch. I love watching and listening to them play together and the memories they're making are so special.

From April to the end of June, we attended 2-3 games a week for the boy's baseball teams. It's such a fun sport for our entire family! Maddie enjoyed playing with other teammates siblings, Sam enjoyed running wild.

 Jace is a huge Kyle Seager fan & Cade loves Justin Smoak. Jace has acquired the nickname "Seager" from his coaches...he's a BIG fan and talks about Kyle like their best buds :)

 

Cade's quite the ball-player...scrappy, aggressive and quick!

 Catching the ball before it hits the "green monster"...aka the apple orchard. Jace played a lot of left & center field as well as short-stop and third base this season. He had some really great hits this season! He's working on batting left-handed as he'd love to be a switch hitter when he grows up

 On Mother's Day, these cutie pies treated me to a fun Mariner's Game...there's nothing like a huge plate of garlic fries and sunshine at Safeco field!

 Jace's spring baseball team...super fun! The Royale's in the Parade...

 Booster Baseball in Royal for Jace

 Caden's baseball team, Bryan helped coach :)

Our preschool graduate

 

 

 

 

Our last day of preschool was a water field day & BBQ!

 

Maddie-girl is officially a Kindergartner now...she (as well as 11 other students) graduated from Preschool on June 5th. Not only did Maddie finish preschool but so did I...I'm stepping down from teaching and welcoming the much needed time I'll have without running a preschool in my home! Having four kids and all of their activities, being a farm wife, and the PTO President is going to keep me busy enough!

 

Maddie is so ready for school this fall. I had a meeting with our school nurses and we developed her 504 Emergency Care Plan. After going through that meeting, I had a harder time with it all than I'd anticipated...just another way that it "hits me" that she lives daily with a miraculous, little half-heart. Our life is in such a great place right now and we're so blessed Maddie's doing so well that I don't dwell on it much. I love the staff and do feel good about her starting all-day Kinder but I'm going to miss my little girl so much and I do have some anxiety about this next step for her. Not being with her 24/7 is the hardest. Trust, guidance & reliance fill my prayers when I pray over my girl. I can't help but be excited for her though...she is ecstatic about this change! Oh, to be 5 again, without a worry in the world. I'm learning so much through this sweetheart.

My cRaZy CReW!

 

 

Fontanniversary!

Today is Maddie's 2nd Fontanniversary! Two years ago, Maddie was in the OR, having her third open heart surgery, the Fontan. It's hard to believe that at this time two years ago, her heart was stopped and she was put on bypass so Dr. M could put a fenestration (hole) in the gortex tube he placed in her heart, which does the work of returning blood back to her heart. No pumping of the blood back from her body to her heart...it just flows by gravity and bypasses the teeny, underdeveloped heart side of her heart. Bizarre to think about.

So what is Miss Maddie doing two years later? Well, she's 4 days away from finishing preschool...

Our preschool recently toured Red Rock Elementary's Kindergarten classrooms as well as ate hot lunch in the cafeteria, this little girl is SO EXCITED and talks daily about going to Kindergarten. She also mentions things like, "Mom, you'll be ok, I'll come back home" or "You can come visit me but I will stay and you'll go home and take care of Sammy"...can you guess who has the anxiety about Kinder? It's not Maddie!

She just had her ballet performance, which she add-libbed some moves in the routine a few times (and it was stinking cute that she did) she loves to perform!

Maddie's enjoyed the kittens we've had lately...2 batches within a month of each other. Thanks to Maddie & Sam, these kittens don't stand a chance at being wild! Those two are kitty tamers extraordinaire!

Life post-Fontan is awesome! Maddie is doing so well and by looking at her, you would never guess she's been through so much in 5 years. She just had her bi-annual check up with Dr. C on May 6th. Her echo was clear, Laura was able to get awesome pics of her heart, which we learned is doing great! Her sats were 90%, she's 47" tall and weighed 52 lbs. That's 17 pounds in 2 years! I'd say her heart really loves it's repair...her growth spurt proves that!

 

Life has really moved on for us, we do keep in touch with fellow heart families but the heart world doesn't overshadow our lives like it did 2 years ago. I've loved this new normal and I'm so in love with this little girl. She amazes me everyday and the gratitude I feel for her and for His grace over her and our family overwhelms my heart at times.

Disneyland!

During Spring Break, we took a quick girls trip to Disneyland. Although 2 nights and 3 days was short, we did get a LOT in! Our goal was to meet princesses, watch parades and of course go on some favorite rides. Since the boys have been a few times, they were really understanding about it all. They enjoyed all of that boy time with dad anyway!

The weather was so beautiful...upper 70's. Our group was Nany (my mom), Maddie and I as well as my sister-in-law Jessica, cousin Kylie and her Grandma Rose Mary.

Rapunzel was the first princess we met. She was so sweet and after standing in line for a half-hour, it was well worth it, even with a shy Maddie at first. This didn't last long, she warmed up quite well to the princesses!

Then there was Merida from Brave...

We spent quite a bit of our time in Fantasy Land...she loved riding the carousel :)

We made appointments for the girls at the Bibbidi Bobbidi Boutique which was so much fun! I was wanting Mooms to go with more of the traditional princess look but she chose the Princess Diva :) SO funny! Of course, it was pink!

If you look in the mirror, you can see the girls hugging after Kylie was "revealed" in the mirror by her Fairy Godmother in training :) It was very magical and cute. Along with the hairdo, the girls got their make-up done, nails painted as well as were given a sash & bag. Nothing is cheap in Disneyland but I thought this was soo worth the money!

After their make-overs, we were off to see some more princesses! It was a short line and they hit the jackpot- getting to see Aurora, Ariel and Cinderella!

Ariel was our favorite...taking time with the girls, answering their questions, visiting with them at their eye-level. She was wonderful!

 



Nany & Maddie enjoying Casey Junior's Train ride

Pinochio's ride

Our second day, we got up early and hit a fun character breakfast at the Pink Plaza on Main Street. Maddie was excited about Minnie...I teared up thinking about Mia when I saw Minnie. She did chose a Minnie Doll as her souvenier for the trip. I guess I chose the same doll when I was 4 and at Disneyland for the first time :) I love that Minnie doesn't go out of style.

It did take her awhile to warm up...she's come a long way with these types of dressed-up characters!

 

 Pixar Parade in the Disney California Park

 That evening, Bryan surprised me by having dinner reservations all made and paid for at the Rainforest Cafe for my birthday! Here's Nany & Maddie being silly together :) The next morning, my real birthday, he had room service delivered. Such a sweet guy I have and I really missed him and the boys while away.

 

Then we saw Belle...

She loved Splash Mountain! So much fun! This was the "biggest" ride we hit and I'm afraid we have a thrill-seeker on our hands...she wanted to go again right away!

We also had the opportunity of meeting up with our California heart friends, the Masons!

Carlie & Maddie are both Right Hypoplasts...having very similar hearts. Carlie is now in 1st grade and doing fabulous! She's an amazing little dancer. She's always an inspiration to see and it's always so great to visit with Shannon :)



And right before we were to get on our shuttle to the airport, guess who we chased after...Goofy!?!

 

What a wonderful trip, filled with so many fun memories. I'm so glad we were able to get away and do the "princess experience" for our little princesses. Thanks to Bryan for handling everything at home and with the boys so well, and thanks to Aunt Lesa and family too for their help while we were away!