Fontanniversary

1 year ago after her Fontan surgery, in the Cardiac ICU

Today, playing in the mud at home

Besides having a busy day with preschool pool parties and watching big brother at his Kindergarten program tonight, Maddie and I spent some time talking about this time last year. I shared with her pictures from the hospital. She was very quiet...looking at every detail in the pictures, asking such sweet and innocent questions and trying to take it all in. I asked her if she remembers and all she would reply was: "I don't know."

To her, today was like any other. She doesn't remember this day like I do. I thank God for this. Today marks a new beginning...our daughter was given the chance to be healthy, pink, and given the opportunity to live such a normal life by completing the final stage of her heart surgeries. We wore pink bracelets during that time that said, Maddie is My Heart Hero. And that she is. Today is an emotional one as it marks the day that we made it to the finish line.

I can't help but think about all of the people who have made today possible. Thank you to her awesome medical team and especially to our family for helping us get to this point. It's taken a village. What a journey these past 4 years have been but such rewarding ones. Maddie Grace, you've taught and inspired and you always keep me looking up. Happy heart day sweet girl.

Cardiology appointment, check!

This week is going to be a crazy one and to kick it off, we drove over the pass this morning for Maddie's Cardiology and Nephrology appointments at Children's. It was a looooong day but well worth it. Getting good news never gets old. Her check-up proved what we've been seeing from her, great results and a growing girl!

Maddie has officially 'graduated' from Nephrology...no need to see her as her kidneys have grown well and are finally similar in size! She doesn't appear to have the reflux as she has shown no symptoms and from her renal ultrasound, they don't see any signs/damage from this. She weighed 42 lbs. and is 42 inches tall (80th percentile).

As for her heart, she's finally hit the 90's with her O2 sats, working her way up from 84-88% since surgery. She actually satted 92% in the clinic today! Whoo-hoo! Her echo showed really nice heart function but also two collaterals...crazy enough, these collateral vessels Dr. Chun believes are helping her out this time around. One is off of her aorta (we knew this one was there from her cath last February) and the other lies on the backside of her heart. They don't seem to be bothering her too much, so we won't be intervening until they cause problems. To see them on echo does mean they are getting some substantial blood flow though, in the past, her collaterals weren't large enough to see on echo. Her pulmonary arteries (always have been on the small side) looked fantastic! They've grown!!! As far as her fenestration, (the small hole that is in the conduit) it's still open and she's still depending on it. I was crossing my fingers that it had closed on its own (higher sats) and she wasn't needing it anymore but Maddie just needs that extra "pop-off" to help relieve pressures in her heart. I'm glad shes's getting a bit of a break with having the fenestrated Fontan but we also talked that it would be nice to close it someday. Having it open poses a higher risk for stroke from a blood clot. She would also gain a few more points in her sats with it closed.

And guess who's Fontanniversary is this Thursday? It will be ONE YEAR on the 24th since our sweetheart's last, and hopefully final heart surgery. Wow. I feel beyond blessed and watching this girl thrive is a daily reminder of God's goodness and grace.

A Party for a Princess

So, our not so little girl, turned 4 back in March...she had a fabulous princess birthday party here at home with her family. Here's a few tidbits about Maddie at age four:

• She played Hoopster Tots and Soccer Tots this spring! She loved participating with her friends. She only complained a few times that her "breath hurt" (when she's winded and needs a break). I was surprised at how well she actually kept up!
• She loves to play with her kitty Cheeto, swing on the playset, have tea parties & play dress-up. She prefers to play more with little stuffed animals than her baby dolls.
• We find her singing to herself in mirrors or in a reflection of the oven or dryer...she loves to pretend that she's talking to someone, like being interviewed or has an imaginary friend she hasn't introduced us to yet...
• She is an awesome eater--no food aversions here! She eats pretty much anything we put in front of her, especially all types of pasta!
• Maddie says funny things like: "jammies ons, shoes ons, clothes ons" (to put items of clothing on, she asks this way),  she loves to eat "zert" (dessert), she can finally buckle her own "seatbelk" and enjoys going to "ballalay" (ballet) once a week.
• She writes her name but it's from right to left...have I mentioned that she's left handed as well?
• Maddie is a great sister- little & big. She is overly helpful with Sam at times! She loves to cuddle and hug him and calls him her "Little Buddy"
• She's doing well in preschool...loves the music, her coloring is beautiful and she knows quite a few of the letters!

She's four!

Thoroughly enjoying her birthday party at preschool this morning

My dearest sweet girl,
It's been four years...and what wonderful ones they've been. Instead of being sad today that you are growing up so fast, I'm so very thankful and happy. Reaching milestones has a new meaning for me through you...we're elated that you're now four, a healthy four year old. Your zest for life, your spunk and the sincere love you share with everyone brings such joy to our lives. You have a wisdom beyond your years and the compassion you have for others is such a blessing to witness. We have learned so much from you Maddie. Thank you for making our lives so full. You have taught us, inspired us and helped us become better people. We love you very much and we're so proud of you.
Love,
Mommy, Daddy and the boys

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