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.

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!