When life changes forever.......

October is the Pinkest Month I have ever seen. Most people are celebrating Breast Cancer Awareness Month and it IS something to be celebrated. Kaitlynn's god mother (aka G-ma) is a Breast Cancer Warrior and more importantly SURVIVOR. We are very glad G-ma is still around.



Who would have ever thought her heart was broken.

For our family, October has taken on a new meaning more red than pink. October 12, 2008 at 5 weeks old we were told Madelynn had a Congenital Heart Defect (CHD). When we finally saw the Cardiologist October 29, 2008 we were told Madelynn had a Coarctation of the Aorta, her Aorta was growing straight up and not curved behind the heart, she had a hole in her heart and the Aorta needed an extended repair requiring Open Heart Surgery (OHS) first thing the next morning. There were some extended tests required to prepare for the next day and we would walk over to hospital shortly.



Madelynn's broken "boot" shaped heart.

As the tests progressed I heard the Head of Pediatric Cardiology say, "There is no medical reason she should be alive." But she was.

Madelynn's heart was successfully repaired October 30, 2008 and she was given a second chance at Life. A chance I have never taken for granted. She did suffer a collapsed lung, paralysis in her diaphragm and contracted strep pneumonia in the hospital after surgery. All of these things are medically correctable it just made her recovery a little bit more complicated and much longer.



Madelynn's repaired heart. It is hard to see here but there
is wire holding her breast bone back together.

A few days before Thanksgiving 2008 Madelynn was released from the hospital but still very weak and fragile. I was so excited to spend my favorite Holiday, Thanksgiving, at home. No more hospital staff, food, couches for sleeping or strange showers to use. My family had planned to spend Thanksgiving  at my sister's in OH. We were also invited but Madelynn was unable to travel. We needed to stay close to the hospital.




Madelynn fighting after surgery.

Kaitlynn's god-parents were going to have Thanksgiving alone so we invited them to our house. Our neighbors were going through a difficult time with family so they joined us too. It is the one and only time we had Thanksgiving at our home. It was weird to not be with my parents and siblings but we were so THANKFUL for all we just endured surrounded by some of those who stepped in at a moments notice to help with whatever we needed. It was the right way to celebrate Thanksgiving 2008.

Winter 2008 through Spring 2009 were the most physically and emotionally exhausting I have ever experienced. All of the specialist visits for all her after OHS care and even a second trip to the hospital because she was not recovering well, was almost more than I could bare. When my birthday came around in January 2009 I received some of the most beautiful, thoughtful cards; encouraging me not to give up and always celebrate the little victories. It was that little push that I needed to "KEEP MOVING FORWARD". A few days ago, I found all of those cards. As I read all of them again, I cried. Not because it was sad but because it was amazing to feel so loved and surrounded by people who truly cared about us.



Celebrating the little victory of FINALLY being able to sit up. It took
months longer than it should have, but finally a victory.

In May 2009 we were invited to Atlantic Beach to attend Phil's brother's, Jason's, wedding to Franka. I was SOOOOOOOO EXCITED. We were allowed to be hours from home, we were going to the beach and it was sure to be a fun time. I was asked to take pictures of the Joyous day, little did I know how important those pictures truly would become. I have pictures of Madelynn playing on the beach for the first time and she was finally well enough to enjoy it.



On our way to Uncle Jason's wedding. The sweet freedom of the wind
in your hair, beach bound, she was SO Happy!!

It was a great time for all of us.

As long as Madelynn's positive progress continued we decided to take her to Florida for Thanksgiving for her first out of state visit. I am not sure I can put into words what it was like to travel for Thanksgiving 2009.

My best friend, Justine, invited us to stop by for a few days. I am not going to lie no matter how emotionally beaten I am; a hug from her makes EVERYTHING in my life right again. When we leave for this annual Thanksgiving trip nothing else matters, NOTHING. I usually take over 1000 pictures, because life is so short and two precious not to savor EVERY moment. After this rejuvenating visit we head to South Florida to See Nana Patti and Papa Dave. The sun, the beach, bicycle rides, walks to the park and LOTS of Laughs cures everything.

This first visit in 2009 was a declaration of freedom. Freedom to leave the state with a child who was well on her way to a new life. Freedom to acknowledge that only the five of us matter for 10 days. Freedom to not be judged for any decision we might make; and if we were it was just someone else's opinion. Something I have never let myself believe before.

Madelynn is my "Heart" Warrior, but I am a "Heart" Warrior's Mom. There is nothing tougher that that. I surrendered my child to perfect strangers, trusting that they would take better care of her than I could. I waited 8 hours to see my child with stitches up her chest and tubes and wires coming from every orifice of her body. I have seen my child crash and come back fighting harder than before. I have slept in strange places, read bloody doctor's notes from surgery and fought to learn how to care for my child days after surgery. She is my gift from God and my responsibility to make the most out of this life.

 

As we celebrate Madelynn's 6th "Heart" Birthday, I ask you to find that little piece of freedom you have been denying yourself. For you "Heart" Moms in the thick of it when you feel there is no light at the end of the tunnel, allow yourself an hour to yourself without guilt. For the Dads working more hours in a week than humanly possible, sit and watch cartoons with your little one and shut the rest of the world out. For ALL the Medical professionals who witness the worst of the worst and still get up and come back to work the next day, do something that makes you smile and wash away the ugly, just for a little while.

Happy Heart Birthday Madelynn!! Thank you for changing my life forever.

TTFN~
Mama