friends with heart!

There have been many blessings along our heart journey with Maddie but at the top of the list has been meeting some awesome families along the way. The instant bond you share is something difficult to put into words. There is an understanding that nobody else can really "get" unless they've walked in your shoes. We share the same triumphs, worries and fears. These heart kids are simply amazing...and their families are too!

We visited Teagan last week in the hospital. She's making steps in the right direction! It was great spending some time with the Maxwell's. Teagan and Maddie are the sweetest to watch together and they have big plans for a sleepover soon! Love it! 7 years ago to the day, Maddie had had her 2nd heart surgery, the Glenn. I was a bit emotional walking in, thinking about how far she has come!

Jesse (Luke's mom) came to visit too and it was great to see her as well! Bringing Luke was a highlight for Teagan as her mama is expecting and she loves babies! So glad Luke could perk her up!

We LOVED bumping into our favorite nurse Stacey! She remembered Maddie right off the bat...it was great catching up with her! She is a fantastic nurse and she and Maddie had quite a friendship during our Fontan stay. It was fun hearing that Maddie was one of her favorite patients of all time and we are a family she hasn't forgotten...maybe that's not a good thing?!?! Lol!

With Angie and Natalie in town from Alaska, we drove over for dinner a couple of days before Teagan's surgery...The five on the right all have single ventricle hearts...they're all post-Fontan except Luke.  I was super teary taking this photo as between them all, they've had 14 open heart surgeries and too many heart caths and other procedures to count. God is sooo good! Many share the same surgeons and doctors.

Maddie towers over her heart buddies...3 "soon-to-be" second graders & Gracie will be in 1st.

Bumping into a new heart buddy at Wal-mart! His story is an incredible one and I've loved getting to know his mama!

Cardiology & the Zoo!

Maddie had her 6 month follow-up cardiology appt on Monday in Seattle so Nany joined us and we set out for an overnight, little spring break get-away. I'm still in shock a bit as this was the best "report" we've ever been given after an appointment!!! Dr. C didn't have any bombs to drop about her heart, he thought she's looking great and doing remarkable! I would agree and we feel so blessed by this great news. She was satting 88, still has her fenestration and there are no plans on closing it, her BP was 95/53, and she's still growing! Her pulmonary arteries look great and he mentioned that if you didn't know her history with PA stenosis/hypoplasia, you'd never guess they've been a sore subject these past 6 years on what to do with them. As for the jets that were seen on her Nov. echo, Dr. C couldn't see them this time so he's sure they had to be an imaging error. Huge relief. 

After her appt, I ran up to the new ICU wing (so fancy) and visited a heart mama friend, Devon. Her daughter, Karlee 5 yrs, had a transplant at 3 months old and recently had a whirlwind weekend, ended up having to have surgery on her intestines/bowel where a mass was found. Long story short, this tough little heart kiddo now has Stage 4 Lymphoma. It is completely heartbreaking. The strength Karlee and her family has is amazing. She's started chemo and is making improvements each day. We're praying for her recovery and healing. Please join us in praying for Karlee and her parents... 

At the beginning of this journey with Maddie, Bryan sweetly said when I was complaining/crying about all of the trips we'll have to make over here, "just think of all of the shopping trips you can make out of coming over for her appointments"...he was right. He probably regrets saying that now! We do really look forward to our Seattle appointment trips! We enjoyed eating out, a little shopping at U Village and outlets (Maddie loves shopping), swimming at the hotel pool and the zoo before heading back to the country... here's Miss Maddie posing with the zoo's "PeaHock" as she called it.

Nany was telling Maddie that Peacocks make a really loud, yelp sound so she imitated one and this guy wanted to impress...he yelped back at us and strutted his stuff. Too funny!

 Sam doesn't pose or smile much for pictures, he is pointing to lion tamer big sis though...

 And the carousel was probably her favorite. Smiling the entire way... 

Sammer and I, he was a little scared so we ended up riding double...

It's such a relief having this appointment behind us. Maddie starts soccer on Monday and we're getting busy with Jace's baseball games in Moses Lake each week as well as farming. The boys have been working this spring break with Bryan, putting in pipe, shoveling trenches, and putting in a sprinkler system. It's been a beautiful week, time to head outside!

Bry & Jace

kindred hearts

One of the perks of being a heart family is having other heart families in our lives. Here's a few pics of some fun adventures with our heart buddies last year... as life gets busier for us, we don't get together as much as we'd like but enjoy keeping in touch still. Watching these first two heart friends grow has been a huge blessing in our lives. 

Visiting Natalie and Angie at the Ronald McDonald House in Seattle after Natalie's Fontan last spring. We enjoyed some time at the Pacific Science Center together, now whenever I see a monarch butterfly, I think of you girls!! And whenever it snows and I want to complain about it, I think of you as well...my Alaska friends!

Maddie & Teagie being goof-balls this August. After a day of school shopping, we met Susie, her mom and the kids at Fro-Yo. These two girls are quite the pair and time always flies when we're with the Maxwells.

This fall, Susie (Teagan's mom) and Kelsey (Mason's mom) joined myself, my mom, my aunt and cousins, and a bunch of Royal friends at the Women of Faith Conference in Tacoma. It was a time of laughter and tears for sure...attending this type of event with women going through/feeling the same emotions and having the same thoughts on raising a child like you is theraputic and bonding, for sure. I also love that our three kiddos all see Dr. C as their cardiologist at Children's too!

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!

I am a heart mom

On Feb. 2nd, I enjoyed a wonderful afternoon spent with some heart mama's. A fellow east-sider & friend, Colleen, and I drove over to Seattle for lunch and met with eight other women. Yes, driving over to Seattle for lunch and back is so worth it if you get to visit with other mom's in your same shoes. All of our kids are single ventricle kids with their own unique, complex heart. Our kids range from ages 6yrs to 5 weeks old. We are all at different stages in their care. Two of these mamas had babies in the CICU at Seattle Childrens and I was deeply saddended to learn that one of these sweet mama's lost their baby just two days after we had joined for lunch together. The reality of 1 out of 10 will not see thier first birthday came true in this group. Raising a child with a complex heart can be so difficult...battling for and then losing a child born with a CHD is simply unfair.

I enjoyed making heart cookies and gave each mama this poem with an awareness ribbon attached as a favor for coming. I don't know who wrote this but I'd like to share some words that describe each and every heart mom I've ever met...

I Am a HEART MOM

Tough * Blessed * 1 in 100 * Inspiring * Pushed to the Limit * Prepared * Knowledgeable * Compassionate * Brave * Special * Tired * Grateful * On an Amazing Journey * a Germaphobic * Fiercely Determined * Selfless * Aware of What Really Matters * Amazing * Hopeful * Strong Beyond Measure * Courageous * Seeking Miracles * Sleep Deprived * an Ordinary Woman Caring for an Extraordinary Child * Living for the Moment * Taking Nothing for Granted * Doing What I Think is Best for MY Child * Loving * Willing to do What's Required of Me * "Okay" * a Cheerleader * a Warrior * Worried * an Example * Strength Personified * an Advocate * in Survival Mode * a Student * Lucky * Pleading * Following My Instincts * Nervous * Stressed *

Stronger than I know!

 

heart sisters

Along this journey, beautiful friendships have blossomed. This special relationship for our family began in March 2008. I met Teagan's dad in the Tully's coffee line at the hospital and her mama in the cafeteria. Oddly enough, Trent and I already knew one another from our high school rodeo days and after a quick converstion, we quickly learned that our newborn daughters were both born with complex broken hearts and our homes were just over an hour apart from one another.

Now almost five years later, I've cherished watching this friendship grow. I like to refer to them as heart sisters. These girls are opposites in many ways...Maddie is tall- Teagan is petite, Maddie is blue-eyed & blond-Teagie has brown-eyes & is brunette, Maddie's missing her right ventricle - Teagan's missing her left ventricle. But despite their differences, these girls have so much more in common... they share a silver line down their chests...a zipper. They share a similar story, they share doctors, their birthday's are a week apart, they only have brothers, they love Tangled and princesses, and together they make one, complete whole heart. These two are both tough, spunky and determined. I've loved watching them grow up together and enjoy dreaming about them spending a week at Heart Camp together someday! The Maxwell's are a special family and we're so thankful God arranged this beautiful friendship for our sweet girls and for our families.

 They loved shopping at Claire's and finding these BFF "half-heart" necklaces!

Hopeful Hearts

Maddie was featured in a CHD awareness video created for the Hopeful Hearts Foundation last year. If you'd like more information about this foundation, click here. Enjoy this wonderful awareness video!

Remembering Mia...

I ache for my friend...a fellow heart mama, one I've known for the majority of my daughter's life. We share much in common...our 3rd child was our heart kid, our two oldest children are the same ages and we have baby boy's named Sam. Our little girls are very blonde, very blue-eyed and full of joy, life and happiness. My friend has lost her baby girl though.

 

Mia returned to her loving Father in Heaven on Monday, October 8th. I still can't bring myself to believe it. Throughout my days this past week, feelings and emotions that I didn't know I had have come welling up. I've cried many tears for my friend and spent hours praying for her and thinking of her. I know that Mia is in a better place...she's with Jesus. It's Mimi, John, Jensen, Ellie and Sam and their loving families that my heart completely breaks for.

 

The thought of losing a child crosses my mind like any other mother but the thought of losing my daughter, because she was born with a very broken heart, crosses my mind every day, sometimes several times a day.Yes, Maddie is doing well and a pretty typical four year old. But so was Mia. What I will take from her passing is this...Mia lived four wonderful years here. She was blessed beyond measure with a loving family and a beautiful life filled with normal experiences and most of all, lots of love. Her life was full and she exuded JOY! As parents, this is something we all strive for...raising happy kids who love life. If we can help our children achieve this kind of joy and happiness, the kind that is contagious to others, then we've been able to help make this world a little brighter. Mia definitely brightened the lives of all who knew her.

 

Saturday, the McDonald family will celebrate Mia's life at her service in Utah. She has inspired and blessed so many and her time on earth was cut far too short but her purpose here was so very great. I believe Mia achieved all that the Lord sent her here to do. What an honor it has been to watch her grow and follow her story from the beginning. Her mother is just as amazing as Mia...she has been a wonderful example of grace and strength for me. Miss Mia, you are loved and have left a big footprint here. We love you and will always hold you and your sweet family close to our hearts.

 

  Mia Marie McDonald  July 8, 2008 ~ October 8, 2012

Meeting Mia and Mimi for the first time shortly after her heart transplant at Seattle Childrens...November 2008.

Enjoying a fun heart mom night out with Mimi, Susie & Teagan and Jesse.

Maddie, Teagan & Mia at the McDonald's home in Puyallup

Dinner at the Ram following one of Maddie's caths...

Heart Family Picnic July 2009

August 2009...Mimi & Mia and Maddie & I following dr appts at Children's

If you'd like to help Mia's family and donate to a fund to help defer medical expenses, click here. To read Mia's obituary click here.