Happy Heart Day!

1 in 100 born with a broken heart...a CHD Survivor!

(photo by Jessica Greenfield Photography, Sept. 2011)

a poem to share...

I STILL WOULD HAVE CHOSEN YOU

By Terri Banish

If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "This soul would one day need extra care and needs," I still would have chosen you.

If He had told me, "This soul may make your heart bleed," I still would have chosen you.

If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you.

If He had told me, "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you.

If He had told me, "This soul may one day make you witness overbearing suffering," I still would have chosen you.

If He had told me, "All that you know to be normal would drastically change," I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you.

it is well

Last month marked four years since I experienced the worst heart-break I'd ever known. Our baby was going to be born with an imperfect, fragile heart. The wonderful life I was living and perfection that I worked so hard for, and carried so much pride in, was suddenly shattered forever. The future I had brilliantly planned was taking a new turn. Our daughter would have to endure multiple heart surgeries and suffer more than I had ever experienced.

The outcome, even with the best scenario (which I believe we've been blessed with) meant she could never be cured, her heart would never be fixed and our little girl would always have a major health issue to contend with. All of our futures are uncertain but the uncertainty of hers as well as the quality of it, would always weigh heavier on my mind. The scar on her chest would be a daily reminder of this. Her CHD would never go away.

So many questions swirled in my mind; how could this have happened, what did I do, where are you Lord, and why? During this time, if I'd been asked, "is it well within your soul?" I would have screamed and lashed back "NO, ABSOLUTELY NOT!" Thankfully, I chose to blog on my "better days" and stayed away from the computer on the rough ones. Yes, as I've re-read old posts, I realize I probably sounded much stronger and more content with it than I really was. January 2nd-March 13th, 2008 were the darkest days I'd lived in my young 29 years. Acceptance of this was difficult to grasp.

Little did I know that when I felt alone and as if God had abandoned me, my family, and my sweet unborn baby girl, He was preparing me. I had to learn to give in. I had to learn patience. I was not going to get my way, I was not going to be in control, I needed to move over and let Him in. I learned to give in. I learned to seek Him, to pray, and to know Him more and now, four years later, I have a lasting relationship and reliance on God. I'm so very glad I was given this trial and thank Him for my time in the valley for I know it won't be my last trial. I may never have learned these valuable lessons without Maddie. I learned to finally trust God and how to give Him the glory in the good ones.

The most valuable thing I learned after bringing her home was when I realized, ultimately, Maddie's future was already written and the pressure was taken off with knowing this. Her care was very consuming and I put so much pressure on myself. When we handed her over for each surgery and procedure, I had to learn to let go and let God be in control. It's funny how when there is absolutely nothing you can do to change your circumstances...you find that handing it over is the only thing you can do. When I accepted that it was out of my control and put my trust and faith in Him, what a relief this was. Trusting in the Lord...what a blessing in my life. I can honestly say that, now, four years later, when things go wrong, and they do and will time and time again, because that is just life, my soul can still be well. He is always there.

"Chief of the Medical Staff" by artist Nathan Greene

pulse oximetry screening

Does your child have a congenital heart defect? How do you know for sure? Some babies show signs of distress right away, some look fine until they have been home for a few days, and some drop dead on a football field having lived with an undetected CHD for over a decade. If you are pregnant, make sure before you are discharged from the hospital with your new baby that you ASK for a PULSE OXIMETRY TEST. This quick, non-invasive test measuring blood oxygen levels in newborns can detect a large number of cases of life-threatening congenital heart defects. It isn't mandatory in all states (not in Washington), so be sure to ask your nurse or doctor about this! It could save your child's life!
This is a picture of Maddie just minutes after birth. She looks pretty healthy, doesn't she?!? Thankfully, we knew about her heart defect before she was born. Unfortunately many families don't know their child has a broken heart until it's too late. Pulse oximetry screening is one way to help prevent CHD deaths in infants. Promote awareness...Spread Hope!

(This post was taken from facebook...thanks Bethany & Shannon :)

a wish for my little girl

(image found on Pinterest)

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...