Fontanniversary & a heart re-check

waiting after her echo to see Dr. C

Today marks 3 years since this girlie's had heart surgery. We call this her "Fontanniversary" and try to recognize it in some way as it's a special day. May 24, 2011 was the day she completed the three-staged surgical repair on her heart, having her third open-heart surgery called the Fontan. Tonight we'll celebrate with chocolate cupcakes and her choice of movie, which I've been informed is "Beauty and the Beast" (the boys will be so thrilled!) 

In fitting fashion, we made a trip over to Seattle yesterday for a quick heart "re-check"...over the past couple weeks she's been extra tired, her sats have fluctuated between the upper 70's-mid 80's and we've noticed more blueness than we have in a long time. I'm glad she and I made the trip over. After an echo, Dr. C commented that she's developed more collateral vessels and when they can be seen on echo, they're usually quite significant (or we just got lucky) but they're also tricky to figure out where they're robbing blood flow from/or dumping it in. She's struggled with growing collateral's in the past, the question remains do we do something about them as he believes they'll just continue to grow. Some kids just grow them, Maddie is one of those kids. Her sats were 87-89% in his office, which is great & within her norm, so as of now, he'd like to wait. If she begins to trend down and stay down with her O2 saturation's, then she'll have to have it addressed in the cath lab and hopefully they'll plug her fenestration while in there. She still has some mixing of unoxygenated/oxygenated blood which causes her sats to be lower than if she didn't have a hole in her Fontan conduit. The best part of the day yesterday was just spending time one-on-one time with my girl-chatting during the drive, shopping at the outlets in North Bend, and having a nice lunch at one of our favorite places.

Subbing in Maddie's Kindergarten Class!

Little did I know that this girl would teach me so much...Having a child with a life-threatening condition has changed, stretched and strengthened me. It hasn't happened over night, accepting the unknowns of Maddie's future is difficult, but it has thankfully brought me closer to God than anything else I've experienced. I'm incredibly, eternally grateful. 

Happy Fontanniversary Maddie, you continue to amaze me each and every day! I love you so much!

Easter & a baby on the way...

Easter 2014 ~ We enjoyed a wonderful church service then hosted Easter dinner at our home with Bryan's family and my folks. Kids enjoyed an egg hunt and baseball game together! 

  

Our family of 6...soon to be 7! Yes, we're expecting!!! I'm 18 weeks along, due Sept. 22nd but will most likely have to have a c-section again (our hospital doesn't do VBAC) so baby #5 will arrive sometime around the week of Sept. 15th. My 20 week ultrasound is on May 8th and we're planning to find out the baby's sex this time around...we need to shuffle some kids around and paint over pink walls if its a boy plus I feel like I need to start getting prepared! Maddie's already telling people it's a girl, so I keep giving her talks "if this baby is a boy, you're going to love having another brother, right?!?" I'm not sure she's convinced...

Life is busy as usual...Bryan with orchards in bloom and frost control, PTO for me, running kids all over: baseball twice a week for Jace in Moses Lake, soccer twice a week for Maddie, dance for Maddie, Cade & Jace are almost finished up with scouts for the school year, and Caden has been itching to get down and ride his horse at Nany & Ba's. We may have a cowboy after all...he's been begging me to teach him how to rope. Love it! And then there's Sam...this boy is t-r-o-u-b-l-e. He's into everything and I mean, EVERYTHING!!! He's quite the mess maker- markers, paint, anything he can get his hands onto and then creates masterpieces everywhere. It's a wonder he's only made one ER visit in his two 1/2 years of life...he recently opened up the car door at a baseball game and fell smack onto his head on pavement. We rushed him to the ER and luckily, a little glue fixed him right up and thankfully, no head injury. Oh boy! I think Maddie has a valid point on wanting a baby sis this time around. On the flip-side, Sam is such a cuddly, loving little boy...he has the cutest little voice, really nice manners saying "tanktoo" for everything, and has a great belly laugh. We love him to pieces and he's my little partner around here. We feel incredibly blessed with our four kiddos and really look forward to adding one more to the mix!

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...