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

The H-Team in Action

My goal of posting each day of CHD week failed...I'm not as faithful to the blog as I once was. Life is so busy with four kids! We enjoyed a little ski trip/waterpark vacation at Silver Mt. in Idaho the last few days so that interrupted my blogging time. So, I'll leave you with a very fun video that my friend Angie shared with me. Loved it! Love "The H Team" and we're so grateful they've saved our daughter's life. Happy Hearts Week!

in memory of Papa

There's a hallway at Children's that's always sobering when walking to the cafeteria from the floor...plaques line the walls with names and names-Seattle Children's Memorial Wall. We've walked this long hallway hundreds of times. After Bryan's dad passed away, in lieu of flowers, the family asked for donations to be sent to Seattle Children's in honor of Randy. So in May, when we had Maddie's cardiology appointment, we walked that hallway again, holding hands with a healthy, skipping, little blonde beauty to look for Papa's name.

It's an honor having his name in such a special place and will be a long-lasting reminder of his legacy for years to come. Our entire family's gratitude to Seattle Children's is never-ending...

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!

Jump Rope for Heart 2013

Last year, the PTO helped our PE teacher put on our Elementary School's first Jump Rope for Heart Event...it was a huge success, raising nearly $6000 for the American Heart Association! Our elementary school has been doing the money raising campaign for years, so having an event the kids could participate in was important. I had the awesome opportunity of helping to organize the event where 2nd-5th grade students enjoyed exercise centers, healthy snacks, prizes and jump roping in the gym after school. Whoo, the sweat! I'd also put together an awareness video for the kids to watch which showcased all of the familiar faces they see each and every day at school who've been affected by heart disease either themselves or with a family member. Students worked on earning pledges prior to the event and all of our proceeds went to AHA. It was a super, fun time and we look forward to helping out with another Jump Rope for Heart in 2014! Here's Jace enjoying his exercise...

the tables could have been turned...

Did you know that for 1 in 10 babies born with a heart defect, it's a fatal one? Maddie IS that 1...without intervention, she would have died within a few hours or days after birth. We were fortunate to have been prenatally diagnosed but there are many families out there who bring home their new baby, thinking all is well and they are left broken hearted and wondering why when their baby suddenly passes away. If you are pregnant or know someone who is...take these 6 questions with you to your mid-pregnancy ultrasound.

1. Do you see 4 chambers in the baby's heart?
2. Are there two upper chambers (atria) each with a valve controlling blood flow out of them?
3. Are there two lower chambers (ventricles) each with a valve controlling blood flow out of them?
4. Do the two vessels leaving the heart cross each other as they exit?
5. Is there an intact wall between chambers?
6. Is everything else with the heart look normal?

From experience, most ultrasound techs prefer to not answer questions as they work but by even just asking these, it may make them pay a little closer attention as they scan away. Once your baby is born, ask for Pulse Oximetry Testing. It is not mandated in every state and it's not a routine test in Washington State. It's painless, cheap and takes only a few minutes. Most importantly, the reading of your baby's oxygen levels can pinpoint the most severe, fatal heart defects. 

Lastly, CHD can effect anyone. We have no family history of heart defects and most of the time, it's not genetic. A perfectly, healthy pregnant mother who did everything 'right' can still give birth to a baby with a broken heart. It happened to us. So after you bring your baby home from the hospital, here are some signs to watch for...

1. Does your baby tire easily during feeding?
2. Is your baby cold to the touch?
3. Does your baby sweat around his forehead?
4. Is your baby turning blue, especially around the mouth, nose, and on his hands and feet?
5. Is your baby having trouble feeding?

Unfortunately, a vast majority of CHD's are undetected before a baby is born. Remember, CHD is the #1 birth defect, affecting 40,000 births in the United States and 1 million worldwide each year. It is the leading cause of all infant deaths in the United States, yet despite great advances in screening and diagnoses, a vast majority are still left undetected and can go unnoticed for a long time, well until heart damage has progressed to cause symptoms. A child may be in his 20's-30's before learning of her heart defect or may collapse on the field or court, sending her to the ER to learn that she was born with a CHD. Many parents don't learn of their child's heart condition until after reading the coroners report. Raise Awareness...Spread Hope!

It's CHD Awareness Week!

It's been a little over 6 years since I heard the words in that dark ultrasound room, "Your baby has a Congenital Heart Defect"... I had no clue of what CHD was. Six years later, I live with a survivor. A fighter. She lives each day of her life with only half of a beating heart. Simply amazing. We are incredibly blessed.

Miss Maddie relaxing in Hawaii, Thanksgiving 2013

I have several unfinished posts about our family's happenings, and I really need to get those on here but with CHD Awareness Week and National Wear Red Day today, I'm going to try to continue the tradition of posting something heart related each day this week.

Life is good for us...our Heart Hero is doing amazing! I'm passionate about spreading awareness of CHD so stay tuned as there will be more to come...and thank you for following our journey.