on being discontent

I love reading other blogs, especially blogs written by other Heart Mom's who are passionate about our cause...who are trying to get advocacy for our kids with broken hearts...who are trying to make a difference. They teach and inspire me. I recently came upon a blog post titled, Discontent in the Heartland, written by Amanda Rose Adams of Hypoplastic Right Hearts. It speaks volumes to how underfunded and overlooked this invisible disease can be. Please take some time to read it here.

spreading awareness

Maddie's on Pinterest! I know that many of you are probably hooked on this on-line pinboard like myself...I can spend hours on this site! A few heart mom's created a board to spread awareness of CHD's this month on Pinterest. Check out many CHD survivors & angels here and feel free to repin Miss Maddie on your Pinterest board! A great, new way to spread awareness and many amazing heart stories!

It's CHD Awareness Week

To say that Congenital Heart Disease (CHD) has impacted our lives is an understatement. When our daughter became a statistic, we began to look at life differently. We try not to take as much for granted, mainly our health, and especially that very important pump inside our chests.

So here are the statistics...

• CHD's affect 1 in 100 babies
• CHD's are the #1 birth defect world wide and #1 cause of birth defect related deaths
• Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined

Yes, it's a big deal. A really big deal if your child is living with a broken heart. It's underfunded, there is no cure, and early diagnosis is the key to survival. Why isn't this life-threatening disease more of a priority in our society?

a little catch up on these four!

My blogging has really taken a backseat these days...sorry for the lack of posts. I'm still trying to get into a groove (if it's even possible) to having four kids! Life is great for us, here's a few pictures to show what we've been up to!

Sam is 3 months old already! I love the pictures Jessica Greenfield (one of my preschool mom's) took. She did a great job of capturing little man's personality!
Sam's had a really bad cold for about 2 weeks, his cough has been horrible! I've taken him in twice to the dr, he's had a chest x-ray, RSV swab as well as thorough exams and it's just a virus. He's now sleeping a nice 5-6 hour stretch at night, nursing well, and weighed in at 12 lbs 9 oz... hard to believe Maddie was almost 5 months old by the time she weighed this and she'd undergone 2 heart surgeries already. He's smiling lots now and loves to chat with us. He cries more than I remember the other's crying...but has figured out he gets what he wants this way! Spoiled possibly?Jace had his pine wood derby last week for Scouts...his Greenbay Packer car won "The Sportiest" award but that's about it... he won one race. He's been playing basketball on Saturdays and during a couple of half-time Varsity games. That's been fun to watch!Cade celebrated his 100th day of Kindergarten last week! Yep, he's 100 days smarter! I loved going into his classroom to help with the fun centers. Kindergartners are so dang cute and Cade is a great little student!Maddie is loving preschool...our field trip to the fire station last week was lots of fun. Maddie is a social girl and enjoys having all of the kids come to her basement for preschool. She's made tons of progress and I love having the opportunity to teach her. This week begins CHD Awareness Week and I'm planning on posting something new each day to celebrate CHD and promote awareness. Stay tuned for more posts...

Christmas & 2011

We had a great Christmas and a very busy month...between starting back to teaching preschool the first week of December, Sam and his siblings, continual lack of sleep, Xmas programs, family Christmas parties, an anniversary getaway trip to Seattle, a couple of ski trips to Mission Ridge, and just the holidays in general, well, you now know why I didn't sit down to post anything on the blog last month!

2 wise men and a star at our church's spontaneous nativity program

Santa surprised us at preschool!

Sam turned 2 months

the big sister...she loves her baby brother but has spoken up a few times saying "what about me?" when I'm paying too much attention to the little guy

the boys on Christmas morning

Santa made Maddie this darling dress-up closet! She's loving her dress-ups and accessories

Sam is a good "combo" of all of his siblings but has started growing eyelashes like big brother Cade's :)

Jace is a great helper with Sam and is awesome about walking him around when he's fussy and I'm in the middle of dinner

As the chaos came to an end last month, I was able to reflect a bit on this past year. I'm usually more sentimental when it comes to bringing in a new year...but this year I was so glad to see 2012! Last year was a very big year for us. We were still settling into our new home and all of the projects that it brought, I was in my first year of running/teaching preschool, we had Maddie's 3rd heart surgery and with that brought several trips to Seattle between appointments, a cath and ultimately, her Fontan surgery in May. Oh, and we had a baby!!! I'm happy to say we made it through 2011...there were times when I didn't know if it would all work out but thankfully we were also shown a lot of kindness and support from our family, friends and community which I believe took so much of the load off. 2011 will be the year that I finally learned how to "let go"...

I've felt like the luckiest girl in the world lately...our daughter has overcome three major heart surgeries, six heart cath surgeries, and lives a very 'normal' life despite having a complicated heart. Four years ago, when we received her diagnosis, I never in a million years would have thought it would turn out this well. I can honestly say that our lives are not centered around her heart anymore...and what a great feeling that is. We are so grateful for her, our healthy boys and the joy they all bring to our lives. Thank you 2011, you surely blessed us, taught us, and you'll always be remembered as a monumental one.

cardiology check-up

Maddie's 6 month Fontan follow-up was Monday in Seattle. She had a full work up at the hospital and everything looks great! Dr. Chun was very pleased with her echo, he was able to see her PA's and the Fontan site, thanks to clear pictures and a very cooperative little girl. It's usually difficult getting clear shots of her PA's, due to the scar tissue from past surgeries. Her fenestration (hole created in the conduit) is still there and she seems to be very dependent on that so no hurry on getting it closed anytime soon. Dr. Chun feels like we should address it though in the next year, in which she'll need to have another heart catheterization in order to close it. Her 02 sats were 85-88% which is where he believes they have leveled out at. We had hoped she'd end up more in the 90's but with her anatomy and likelihood of forming collateral vessels, her sats are on the low side for a post-Fontan kid. Fortunately, it doesn't seem to bother her a bit and since she's as high as she's ever been oxygen wise, her body is loving it! Maddie has had more activity, color and just overall better health since her surgery so we'll take the upper 80's and not complain :) She weighed 39 lbs. and was 40 inches in height--yes, she's grown a bunch since her surgery too. I can't believe she's in the 80th percentile for growth! Miss Maddie doesn't need to be seen again for 6 months, unless something comes up. When I stop and think of all she's been through this year, it's truly amazing and reminds me of how remarkable that little heart of hers is.

this little turkey...

likes to sleep all day and wake up every 2-3 hours at night. Yes, we're still on that newborn-type schedule. I don't know if you can predict "personality" at 1 month old, but this guy knows what he wants, when he wants it. There is no "talking him out of it" and he can be impatient and fussy or super sweet and cuddly!

We had a really relaxing Thanksgiving at Grandma and Papa's...enjoying family, good visits and of course, lots of food!
these 3 cousins have become quite the trio--they are much louder than I ever remember the little boys. They sure know how to have some fun! And, no, we did not coordinate their outfits, turned out so cute though!
Our cutie pie Sam was one month old last week!
And big sister was 6 months post-op from her Fontan surgery on Thanksgiving day. So, so grateful that a half-year later, we're here. I'm thankful for this...and so much more.