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!

Maddie's 5!

Miss Maddie turned 5 on March 13th! Yes, it was a month ago and here I am, finally sharing about it. RSV left almost as quickly as it had come on with our girl. She spent a week low-key, at home and on oxygen when needed. She also ended up with an ear infection following the virus, 10 days of amoxicillin cleared that up. As of now, she's healthy and back to her norm :)

A Dora Guitar from Grandma A! Just what she wanted!

She was so excited about her new saddle! My folks found this adorable saddle and surprised us all with it! She's looking forward to riding her Sparky Boy a lot this spring...now if we just had some cooperative spring weather. The boys are pumped about it too. What a fabulous hobby for her and easy on her heart. She told me recently that she'd like to grow up to be a rodeo queen. Cute but we'll see. Not really this mama's thing!

She looks so grown up in this picture. She has had a tremendous growth spurt since her Fontan...putting her in the 90th percentile on the growth charts now! I never would have guessed this in a million years during her first couple years of life, she was so petite and little. At her well-child exam, she weighed 50 lbs & was 45.7" tall! I registered her for Kindergarten this past week...she's sooo excited, me on the other hand, that's another story.

Maddie with her girl cousins at her family birthday dinner...they're all such pretty girls!

 

 

The following day, she had her first "friend" birthday party...8 little girls under the age of 5! It was a blast! She chose a mermaid theme...so they swam in the 'mermaid lagoon' and I worked a couple of late nights sewing mermaid tales. I shouldn't wait until the last minute...

 

They wound down at the end of the birthday party with a Barbie and the Mermaid Tale movie!

And last but not least, our celebration at preschool included one of her fave's...icecream! I'd say we celebrated turning 5!

RSV

 sweet girl still trying to smile in the ER last night

 

I had other posts in mind...like Maddie's 5th birthday party but instead ask for your prayers as she's caught RSV. After a 6 hour visit to Wenatchee's ER last night, we now know why Miss Maddie became so sick and so fast. Her symptoms only began a couple of days ago...runny nose, watery eyes and a cough which turned into a raging cough Friday. I had first attributed her light cold symptoms to the weather we've been having: so windy and cold but it was the onset of this nasty virus. The fever began Thursday evening and she hasn't had an appetite (which if you know Maddie, that's not her). We visited her Ped's office first thing Friday morning and after an exam, Dr. Milnes mentioned that he thought she looked ok, just for me to watch her closely, give her Tylenol for fever or pain and keep in touch. He figured it was just a virus but also mentioned that it could be RSV but didn't test her for it. Saturday morning came and she was spiraling down with a high fever, sleeping most of the day and overall just had a rough day. Her sats stayed in the 70s, her breathing was rapid and her color worried me...after calling on-call Ped & Cardiologist, it was recommended to get her in again to be looked at as well as to give her some oxygen support.

The ER doctor was great and after knowing her test came back positive, they were admitting us to the floor in an isolation room. I discussed the possibility of having oxygen here at home and whether he'd be ok with that as they'd just be giving her O2 support and monitoring her sats and heart rate if they kept her. He was very understanding, agreed with me that I could care for her at home with the exception that I call if anything changes and get her in ASAP. Our major concern now is if she develops a secondary infection and the hospital is the WORST place to be if we're trying to avoid germs and infections. So, we're home now and staying put as to not spread this nasty virus and allow her time to get over this. I've cancelled preschool for the week and have two wonderful Grandma's on duty for the times that I need to be out.

Currently, Maddie's watching cartoons, she's at 2 liters of O2 to just get her sats to her baseline of 85, otherwise she's hanging at 75%. It feels like we're pre-Fontan again. Ugh, I just hope she quickly kicks this and I'm praying she doesn't develop any secondary infection. I'm just hoping that the two years of spendy Synagis shots she had as a baby are still in her system and will help her kick this quickly. Wishful thinking, I know.

It hit me as I was driving her to Wenatchee that she's not a "typical" 5 year old and she never will be normal...when she gets sick, her heart and body are taxed so much more than a healthy child her age. Reality hit me yesterday.

Let's get caught up!

Sam is now 16 months! He's starting to talk and mimic us, which is super cute and we love getting him to say "dora", "oh man", "uh-oh", "ooh ya". He catches on really quick and keeps us entertained! Sam's a great eater but a petite little guy...his nickname from Papa was "Stubby" since he has the shortest legs of any of our kids, maybe taking after his grandpa?

 Maddie just finished up Hoopster Tots...she enjoyed it but had to sit down and catch her breath a couple of times at each practice. She's satting in the upper 80's now which is ok- wished she was into the 90's, maybe she'd have a little more stamina. I'm glad she's learning to self-monitor herself and she's not afraid to tell me or the coach that she needs a break. She turns 5 on Wednesday and we're busy gearing up for her party!

Jace won 2nd place at the Scouts Pinewood Derby...thanks to Dad and our cousin Bud for helping him build a fast Hot Dog car!

We enjoyed a little get-away to Silver Mountain in Kellogg, ID in February. The kids absolutely love this place- skiing during the day and swimming in the evening! There were several families from Royal who went as well which made it such a fun trip!

 Maddie even tried out skiing one day! I wouldn't say she loved it but she's given it another go since! We'll see...I'm not super pumped but Daddy would love her to be able to ski.

Preschool is keeping us busy! This is my last year...I'll miss it but my family keeps me busy enough :) These kids are so social and a blast...lots of characters in this class!

 My mother-in-law treated me, her sister and my sister-in-law to a fun weekend trip to Las Vegas. I hadn't been there in 13 years and whoa, it's changed! We enjoyed shopping, the warm weather & seeing Carrie Underwood in concert. Lesa and I also went to Bodies...so incredible. I highly recommend it! Amazing seeing the many hearts, especially a fetus' heart- made me cry.

Have I mentioned we've taken on skiing as a new hobby? We've went more this season than I have probably skied my entire life! We've made a lot of fun memories with the boys this winter. Caden is a spectacular skiier. Really. He's a natural and now enjoys going over jumps, skiing backwards, doing 360's down the hill as he skis. He'd also like to race he tells us...

I can't keep up with these guys anymore and frequently hear them yelling, "Come on Mom!" Cautious, that's me with these three dare-devils :) Fun times!

♥ hearts ♥

When I see hearts, I think of her...I think of many broken hearts that fight with every beat. I think of the kindess we've been shown. I think of miracles. I think of the many doctors and nurses who save little lives each and every day. I think of strength. I think of those who have lost their battle. When I see hearts, I don't think of the holiday anymore. I think of Congenital Heart Disease.

 

(quilt made by my mama & Maddie's "cough pillow" she used at the hospital after her Fontan surgery...signed  by our favorite doctors & nurses)

in honor of Miss Maddie!

A friend and preschool mom of mine, Jessica, came up with this fun idea to give back for heart month! She is offering a couple of days of photography sessions and will give the proceeds to a charity of Maddie's choice! Hmmm....we have so many favorite charities, which one will Maddie choose?