Eight years and counting...............

Eight years ago today at this moment I was sitting in a waiting room with Phil, my parents, Phil's mom and sister. Jack and Katie were at preschool. While we waited Madelynn was put under anesthesia, her rib cage was broken, her heart was stopped, holes in her heart were closed, part of her damaged aorta was removed, her remaining aorta spliced back together, her heart was restated, her rib caged wired back together and we waited.

We waited to see if her body could withstand all the trauma. We waited to see if she would awaken. We waited to see if we would get our little girl back.

It was not without breathtaking anxiety, sleepless nights and lows I could have never fathomed. Her heart had difficulty keeping up at first, her lung collapsed, her diaphragm became partial paralyzed and she was very sick. I had found rock bottom.

Thankfully her medical staff did not know the definition of that phase. They smiled and encouraged and helped pick us up. They reminded us they had not given up. We had family and friends who helped along the way and each day the sun shined a little brighter. Eventually Madelynn smiled again.

We are grateful to Dr Alfred Kendrick for finding her heart defect when he wasn't looking for it, to Dr. Christopher Baird for completing the open heart surgery that saved her life, to Dr. Nicholas Sliz for reminding us this was not our fault she was born this way, to Dr. Alan Harsch for encouraging Madelynn to live life with no limitations, to Dr. Douglas Chen for helping monitor her day to day care. For the nurses who never gave up, started each day with a smile and making us feel like we were the only patient that day.

Today we will breath the air a little deeper. Today we savor the sunshine a little brighter. Today Madelynn's smile will fill my heart a little fuller. Today we move on and enjoy another year that at one point we never thought possible.

Happy Heartaversary Madelynn!! We love you to infinity and beyond.

TTFN~

Making the long haul down 601 through every open door

Eight years ago, almost to the day, Madelynn was being transferred to a step-down room in the Cardio Vascular Intensive Care Unit (CVICU). Her heart surgeon happened to be walking down the hall during the transfer when suddenly they realized she was in trouble. The next thing I knew she was reintubated, very, very sick and they were talking collapsed lung and paralysis in her diaphragm. Just a little too much for this momma to take since open heart surgery was less than a week prior.

But she fought, every single day she fought harder than the day before.

As part of her release from the hospital, she was under the care of a pediatric pulmonologist. Seeing this specialist had a very rocky start. Thanks to Madelynn’s primary care doctor, we found an excellent choice. Of course, it wasn’t a choice he was the only one for a few hundred miles. However, God always has a plan and it was a good one. The worst part was he was a few counties away and a long haul. The appointments are never quick because she must complete breathing tests to see how her lungs and diaphragm are functioning. Sometimes we would get there and Madelynn was in distress and breathing treatments were required.

Every time that happened I felt as if I had failed her again. How did I not see that? How did I not know my own child needed help? I would usually cry all or part of the way home thinking I failed again. The two hour round trip drive became a form of therapy for me. Madelynn would usually sleep most of the way, Phil is at work so me, myself and my thoughts became the entertainment.

Today’s appointment was no different. Madelynn had earbuds in and I was driving us down HWY601 through three counties. I should admit I have learned to love the drive. It is a 2-lane highway, large old barns, horses, cattle, towns with only a post office and beautiful rolling hills. In the last eight years, I have watched a factory go up, old barns come down and parts of the country become parts of cities. Usually this appointment takes place in the summer, this year it was pushed back to late fall. The fields weren’t smothered in corn taller than my van but cleared and you could see the farms getting ready for winter, rolled hay, the trees were bare and farm equipment put away.

Every time I go to this appointment I have big dreams. I am always let down. My hope today, the doctor would clear her for good. Not quite. During the testing Madelynn, must try and blow a constant stream of air without taking a second breath. It is turned into a video game so it is very interesting for the kids. Her player bounced across the screen so it was messy but she did it. She is then moved to what I call the big box. It is slightly larger than a telephone booth. She is hooked up to machine and must bowl a strike with her breath. Ultimately, she must take a deep breath and then empty her lungs without taking a second breath. She did not make a strike. The ball never made it to the pins.

After a few more details the nurse needed to obtain, we met with the doctor. He told me that reviewing the results he believes either her diaphragm is completely healed or her mighty body, as tiny as it is, has figured out how to compensate for what her diaphragm can’t do. All great news right!!!?? Then he tells me he is not ready to release her yet. He does not know what her body will do as it matures and ages. Will it be able to keep up if she is compensating and not completely healed? So, we are released for the next two years and will see him in 2018.

I refuse to be discouraged. This will be hanging around in the back ground for the next two years. But we do not have any limitations. We can still live life just as before. Let her do and try new things until her body says no. We keep moving forward.

God knew I would put thousands of miles on my car making the drive. He knew the reflection time was necessary. He knew he had to take all the other doctors away so we would travel to this one. He knew I would love admiring his magnificent creations. I will always travel the long haul down 601 because I believe. I believe He has big plans for Madelynn and I will never close an open door. 

TTFN~

A Hard Day

Today was a hard day. 

Earlier this year I made a commitment to complete 5 5K's in the year.  Of the 5 of them, three were all about the heart. The first one was the Cupid Cup 5K which supported Cardiac Rehab. The third was Heart of Warrior 5k supporting 335 Heart Foundation. My 5th and final one CHD Remembrance Day 5K supporting Mended Little Hearts. 

Today is CHD Remembrance Day. Today is the day we honor all of those heart warriors who lost the good fight. I am not going to lie sometimes it makes me cry. Some days I get stuck in thought wondering why we had to walk this road, why did Madelynn survive (medically she shouldn't have), so many why's and so little answers.

But then I think if not for CHD's I would have never met Connie, Roger and Jessica. They are a heart family that has brought more laughs than tears into my life. We have shared more meals together than some of my own family. I just know it is always a safe no judgment place. So our horrible experience found great friends. If not for CHD I would not have been able to help families reeling from a recent diagnosis. I have talked families off the edge of their anxiety to help them clearly and make good decisions. I have been able to use my experience to help others.

Today while my youngest two children were on the soccer field I walked more than 5000 step to complete my final 5k. I had invited others to walk with me but life seemed to get in the way and I found myself walking it alone. All of the 5k's I completed this year that were heart related I completed alone. At first I was extremely disappointed but when I realized I had completed all the others alone I buried myself in my thoughts and completed my final 5k.

A few days ago I had an epiphany. I discovered that CHD Remembrance Day is also the same day that Phil's brother passed away from a tragic accident. This was another event in our life that changed everything. Phil was very close to Jason. I had to call Phil to tell him his brother was gone. I was afraid someone would call him while he was driving home so I called him before he left the job site. Sometimes just thinking about all the experiences he and his brother will never share makes me cry.

In one 24 hour period so many emotions crossed through my brain it was almost too much. The best way to for me to keep moving forward is to clear my head. So the Remember Our Hearts virtual 5k was just what I needed. I walked what seemed like a million laps around a soccer field. A place that seems like a second home. When I was finished there was Phil standing there to greet me. Just like most of the journeys in my life it was not how I thought it would go but it ended with Phil and I standing together.

TTFN~

Sending our regrets but always grateful for the support........

Eight years ago this month I found myself standing in an urgent care with a doctor I had just met. He was telling me that he believed my 8 week old baby girl had had an undiagnosed congenital heart defect. As I sat there listening I believe I was in some sort of shock. The doctor told me to go home and wait for him to call me back. He was going to call in for an immediate second opinion and get back with me that day. Thinking back on that day the doctor must have been pretty certain something was wrong because he was able to get a second opinion on a Sunday morning during church hours.

Friday night I found myself in the same urgent care, with that same child but for a different reason. Let me reassure you she is ok, she just managed to obtain a little infection. But I will say it is all I could do to not hyperventilate when I walk through the door. I tried to get Phil to go to the children's hospital urgent care not far from our house, but he misunderstood and he brought me to this one. Sometimes it is all I can do to keep it together.

A week from tomorrow we will be celebrating Madelynn's "Heart" Birthday. One of the scariest most grateful days I have ever experienced. Tonight all of our Heart Family Friends are partying it up at the Camp LUCK 6th Annual Auction and Casino Night. It is one of the two major fundraisers that makes everything Camp LUCK does possible. I wish we could have gone. With our full soccer schedule and Madelynn still not quite 100% it was just not in the cards tonight. It made me sad because I love being able to support Camp LUCK in any way I can.

Because of Camp LUCK we have made some amazing friends. We have found a support system that understands the good days and bad. They understand the anxiety of the next check up, test results or when the next surgery will be. Sometimes you don't have to explain anything to them because they already know. Just knowing someone is with you or has been in your shoes makes the journey just a little bit more bearable. We have come along way since those very scary days October 2008.

Tonight if you feel so inclined to make a donation on behalf of Madelynn and all the Heart Kids that benefit from everything Camp LUCK does here is the link: www.campluck.com/donate/
You see Camp LUCK kids camp is FREE for all of the heart kids to attend and bring a sibling for a week. Not to mention all of the support available to help families through a journey they never thought they would be on.

Thank you Camp LUCK we are so sorry we have had to miss the event.

TTFN~