7 days a week, 365 days a year.....

Today ends Heart Month! For families with children fighting heart defects the journey never ends. There is no remission, there is NO CURE. We are reminded 365 days a year and not 28. We find the strength to surrender our warriors to a surgeon knowing no matter what the result our lives will never be the same after.

The other day I came across a picture that every time I see it I stop. This picture represents the last time my life made sense. It is the last time I remember what my "normal" life used to be. When I see this picture I had no idea what the inside of a children's hospital looked like. I didn't know most of my current friends. I didn't even know what a CHD was. Life changed forever.

Would I choose this life? NO! Do I regret it? NO!

Because of Madelynn's CHD, I have a tight knit group of heart moms that are worth their weight in gold. These women understand our journey. There are certain things that I do not have to explain why they just know. They make the hard blows we take about our warriors a little softer. I am truly indebted to them.

Because of Madelynn's CHD, I understand parents of chronically ill children much better. I appreciate every good day and savor every ray of sunshine. Parents don't necessarily want you to fix everything sometimes they need a sounding board to just vent. If they don't let it out they can't move on or realize what they need to do next.

Because of Madelynn's CHD, I have learned to pray more, accept whatever decision the Lord has handed down and most importantly make a conscience effort to understand why this had to happen. What did I need to learn from it? How is this going to make me a better person?

Don't get me wrong none of these sound like very glamorous jobs. They are not easy tasks. Some days I just don't want to do it. But what if I didn't? What if I stopped following  and praying for heart families. What if one day God laid it on my heart to reach out to a family and I didn't do it? What the world end? Probably not.....But I also neglected to give hope to a family struggling. I am not sure I could live with that.

We don't just need support and cheerleaders during the month of February. We need prayer warriors, and friendly hellos, hugs when you see us and mean it when you ask how we are. The is a very real experience all year long and it almost never an easy one.

Thank you for all of those who have always supported us and our journey. Thank you for just calling to say, "Hi". Thank you for rushing to the hospital in our moment of crisis. Thank you for the moms shopping days and dinners. Thank you for even just for a little while making life seem "Normal", whatever that is anymore.

TTFN~

Happy Heart Month!

CHD Week - Day Eight - Tribute to my Warrior

Since becoming a Heart Warrior Madelynn has been on a magazine cover

She was even one of the featured children on the inside of the magazine.

She became the poster child for the second quarter for Dairy Queen's involvement with the Children's Miracle Network last year all over the US.

She is helping spread awareness with the 335 Heart Foundation for children born with Congenital Heart Defects. Click the video to learn more and see Madelynn.

She was one of the youngest Heart Warriors to attend the inaugural year of Camp LUCK Family Camp in 2010. This May will be her 6th year attending.

www.CampLUCK.com

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It became a game that she would run away and Daddy would chase her (2010).

She was so tiny but had so much fun (2010).

She was ready for the Hawaiian Luau Lunch (2010).

Camp LUCK Family Camp 2014

She was even entered to win the ROCK YOUR SCAR contest with Mended Little Hearts (National).

However, none of these events is who she is. Traditionally, she is just a 6.5 year old little girl trying to keep up with school. She struggles daily with fine motor skills to be able to write. Because of her miniature stature she takes two or three steps for every one of mine. Her daily routine includes school, homework and soccer in the fall and spring. Except for the curiosity of why an almost 7 year old is so tiny, you would never know there is anything wrong.

We try to keep her life as normal as possible when we can. The opportunities we have been afforded to help spread awareness for CHD's, we will jump at the chance every day of the week and twice on Sunday. If the research and surgeries had not been done prior to hers, she would not be here today.

She is the reason I will get up at 6am go run a 5K for Cardiac rehab, race back out to the country to watch my other children play in a basketball tournament all while my mind is always wondering how else we can spread the word and help these heart warriors. I have seen where a hundred times over where parents will say they did not ask to be a member of this group or part of the growing statistic of 1 in 100 children is born with a CHD EVERY YEAR.

But we are a part of this statistic and we will do everything thing we can to spread awareness to raise the funds so that fewer heart warriors become heart angles and earn their wings. We love our heart families and wouldn't be who we are with out them.

Thank you for sharing our journey with us this week.

Happy Valentine's Day and Heart Week!!

TTFN~

CHD Week - Day Seven - Heart Dad

Madelynn's Dad is Amazing

He loves to just be a kid with his kids

Madelynn's Dad loves me beyond infinity

Madelynn's journey  has made wedded bliss challenging.
18 years together and I wouldn't want to take this journey
with anyone else.

Madelynn's Dad is a warrior of a different kind

This is his motto in everything he does everyday.

When Phil and I were given Madelynn's diagnosis we were stunned. The first thing we did was hug each other. He knew I would not leave the hospital and he went into a mode I had never seen. He left Madelynn and I at the hospital went and settled everything with our other two children. When he came back he was truly present in those hours before her surgery. Nothing else mattered, NOTHING.

Sharing cheerios

He was there for every scary intense moment and remembers it like it was yesterday. After a few days, reality set in. As much as he wanted to be with us at the hospital he had to go to work. If for nothing else to maintain his sanity. However, the medical bills were not going to pay themselves and we had A LOT of them coming. This is what he could do.

He worked his butt off. But when he walked through the door only his kids and I mattered.

Spring 2009

He could not fix Madelynn, the doctors needed to do that. But he could make sure Madelynn had everything she needed for the best life possible. At the time we had no idea what that would be. I had to take months off to care for her including therapy, specialists, weight checks, we met almost every specialist under the sun. During this time, we never missed a meal, or had a utility shut off; God literally threw work his way to make sure we had what we needed. I won't lie it was tricky to figure it all out and dropping payments off the day they were due happened often. But we made it.

Sometimes to save money I would cut the boys hair.

One of the funniest stories I can tell about this time......He had not seen Madelynn for a day or two. He was working and coordinating child care for our other two children. He only had about two hours. He came by the hospital to see her in his plumbing truck. Knowing full well when I saw him he was driving it I asked him where did he park it.(Anyone who has been in the hospital parking garage knows what I am talking about). He grinned and said the hospital valet parked it for him. I am just imagining one of the guest services staff in their bow tie and vest driving the plumbing truck. More importantly they understood the need for Daddy to see his little girl and took care of it.

Phil is always involved with the kids lives, not just Madelynn's.

Picking out pumpkins with Peanut October 2009.

He has helped coach Jackson's basketball team for three years.

His favorite thing to do was to put them to bed. It usually meant he fell asleep too.

However my favorite story to tell you about Phil is the kids hats. When they were born there is a picture with each of them wearing the little pink and blue striped hat. It was recommended that he take the hat home for the pets to smell so they knew a baby was coming. We wanted to make sure they were already familiar with the child. What I could not fathom is that the hat would never leave his pocket. If you ever see Phil in public ask him to see what is in his pocket. He will pull out the three hats from when each of the children were born. He never leaves the house without them.

I took this picture in 2008. You can tell by how clean they are whose they are.
One day the kids will have this story to remember forever.

I don't know what Heart Dads talk about. I can't tell you how they process raising a CHD Warrior. What I do know is most men are fixers. If something is broke they fix it. Having a child born with a broken heart is traditionally beyond their scope of repair. What I do know is he never gave up on Madelynn or us. For every intense, scary, raging moment he was there and fought everyday with me. I would have never made it this far in our journey without him. He is probably the reason Madelynn had so much fight in her.

Daddy just got home from work. Can you tell how I rate?

I love my Heart Dad Warrior probably as much as she does.

Happy CHD Week!

TTFN~

CHD Week - Day Six - Heart Mom

This CHD project I have been posting about for the last five days has been easy until now. I found it on Facebook and it was just supposed to be a picture that represents each of the titles for each day. I decided to take it further and actually post about it. Now that I actually have to talk about my personal experience it is a little hard to do.

Being a Mom is hard. Being a Heart Mom is such a daunting task. I was thrust into a world I didn't even know existed until October 2008. I have to take my day to day mom skills and retro-fit them to handle being a heart mom instead. You quickly learn about pulse ox, blood pressures, blood flow, chambers, valves, not exactly the words I thought would ever be a part of every day vocabulary.

Not to mention all the emotions that come to the surface and you have no idea why. I know they are their because I have lived them. For any Mom who receives life changing news about a child there is a time of grieving. Yes, I said Grieving. In order to take on the marching orders set before you with your child's diagnosis, letting go of the dreams you had for a heart healthy child and accepting the challenge in front of you is very key.

You can be angry, sad or in denial of your child's diagnosis. You can cry so many tears you feel like you have none left to cry. You can be angry; angry at God, yourself or the world. You can barter with a change in your life to make all of this not be true. But facts are facts and they are my child has a CHD. I need to accept this and move forward. Even when you think you have moved on from the stages of grieving sometimes they come back.

Sometimes they come back in the form of PTSD. I know that sounds strange to say but it is true. Living a truly traumatic event and then weeks, months or years later you find yourself standing in the that same room, smelling a familiar smell or seeing an old picture from that very dramatic day it can stop you cold.

For me it was a room. The first CVICU room Madelynn was in after surgery. It was small and a very serious room, especially for the first 24 hours. I remember being in shock.  I didn't know where to stand, what to say; she just lay there so lifeless. There is nothing in this world that will ever prepare you for the first time you see your child after open heart surgery. The dried blood, betadyne stains, the tubes, wires, the beeping and machines. If there was any denial before this moment it made everything very, very real.

Three years later I was walking through that floor of the hospital visiting another heart family. The very serious rooms are behind the staff work station, a set of swing doors and a sliding door. At the exact moment I walked by the swinging door was propped open, the sliding door was open and the sun was beaming beautiful rays of sunshine through that room and it was lit up like Christmas Morning. It stopped me dead in the middle of the hallway and took my breath away.

I was overwhelmed, every day of our heart journey flashed in my mind in a matter of seconds. The Peace and Joy I felt of God's promise of saving Madelynn's life was uncanny. I started crying and could not stop. I walked out of the hospital with tears streaming down my face. To this day, I can not tell you why I started crying. All the days when I was in the thick of it and could not cry or I had to remain strong, I did not have to remain strong that day. I was going home to hug my babies.




A picture of the sun rising in Madelynn's room the morning after surgery.

Having lived all of this, most days when you see me I will be smiling and laughing. Not because that part of the journey didn't matter but I survived it. When I tell part of Madelynn's story, certain words or phrases cause me to choke up but I can tell you her story joyfully. Her story is one of hope and promise, there can be happiness on the other side of this treacherous journey.

I realize not every heart mom has a journey like mine. I know these warriors fight so hard and some earn angel wings instead of a ride home with mom. There is a special place both in life and heaven for these mom's. Knowing how close I came to being one, I hold a special place in my heart for them and pray for them all the time. I admire them daily for never giving up.

Heart Mom's are strong, courageous, unwavering, amazing women who never stop fighting. I never asked to be one of them but I am proud to stand beside them.

TTFN~

CHD Week - Day Five - New Life

For day 5 of CHD week, the title was NEW LIFE. We were given an incredible chance at new life for Madelynn. Something Phil and I are incredibly grateful for. There are certain photographs that I just have to see them and I can tell you everything; the month and year, how I felt in that moment, how the air smelled, exactly where we were, absolutely everything. They are powerful memories that changed my life forever.



The day after Open Heart Surgery to correct her CHD. She was 10 weeks old, October 2008

 

The day she was released from the hospital the 2nd time, December 2008.
 

Enjoying fresh air, finally on the road to recovery, January 2009.

These next three pictures are pure simple JOY!!
 

The freedom to travel out of the region for the first time.

Freedom to stick her toes in the sand and the ocean for the first time, May 2009.

This picture ALWAYS makes me smile, August 2010

A lost but found photo I just LOVE, January 2011



Every time I see this photo I am grateful she is living life to the fullest, June 2014.

 

Her first roller coaster, June 2014.
If you look really close you can see the top of her zipper scare.

Being a CHD family we are added to a statistic we never asked to be a part of. We had to make a new normal and figure out what works for us. Even families who have the same CHD as our Madelynn, their journey is different but the same. Our story is one of hope and we are happy to share.

We share to help those families recently diagnosed.
We share to remind those families everything is worth fighting for.
We share to show families they can have new life too.

But......

We also share to bring awareness to what can be a horrible experience.
We also share because there is never enough funding for proper research for CHD's.
We also share because every 1 in 100 babies is born with a CHD.
We also share because one day we hope all babies born with a CHD can be saved.

Madelynn is 1 in 100.

TTFN~


CHD Week - Day Four - Realization

When I decided to take on this project for Congenital Heart Defect Awareness Week I knew this post would be the hardest to write. I know when my moment of realization was and it wasn't pretty and I was completely alone.

Phil and I were told Madelynn's heart was damaged on a Sunday afternoon by an urgent care doctor who found it accidentally. Two days later Madelynn's pediatrician said he would make the appointment with a pediatric cardiologist. There was no real rush because Madelynn did not display any symptoms for her eventual diagnosis.

I had no idea what to do with any of that information.

So for 16 days I privately researched what little details I could figure it. Other than Phil we did not tell anyone. At some point during this time I sent out an email to immediate family telling them what little we knew. I did not want to talk to anyone. Because of the shock of the situation and I simply did not have the energy to rehash what had happened thus far again and again. It simply wasn't in me.

I am sure this sounds rather selfish but she is our daughter and our day to day lives being effected. I had so little control over what was about to happen to us, I needed to maintain our daily living with our children as long as possible.

As soon as we were told Madelynn's diagnosis, surgery expectations and after surgery prognosis, the cardiologist had some preparations to make and left Phil and I in the room with Madelynn. I told Phil I needed to call work. He kind of angrily looked at me and asked why. I told him I don't think I can tell this story more than once without crying. After I took care of business I could break down. But that never really happened. I was always having to keep it together.

The next day when I handed her over to the surgeon I thought I would break down then. Or when I saw her for the first time after surgery or the day her lung collapsed and we fell backward about 10 steps but it never happened. Not even when Phil and I finished telling our mothers and hugged each other. We just packed it all in and slowly started this journey.

About a week after Madelynn's surgery we were invited to a support group meeting at the hospital. We met several other families who had children with Congenital Heart Defects (CHD's). It was nice to know we weren't alone. The next month when this group was to meet again Madelynn was in the hospital again. Only this time the support group was meeting off the hospital campus so we missed that meeting.

Two months after Madelynn's surgery I had the opportunity to attend another one of these support group meetings. This time they had a guest speaker. I honestly can not tell you what the person spoke about or who they were. What I can tell you is I was at the bottom of the barrel. Madelynn had been in an out of the hospital, wasn't eating, she was barely gaining weight, every detail of this fight to help her survive and I was failing. When I walked out of the meeting, whatever the person said made me cry. I cried the whole 45 min ride home.

I had never just let go, accept what had happened to her and how it happened to her. I did not really allow my self to feel anger or sadness to feel anything really. That night I felt and relived every emotion completely alone. I cried harder than I had ever had in my life.

That night I accepted that we were a CHD family. I accepted that my plan for this life completely changed. I accepted the fact that I had no idea what tomorrow would bring. I accepted that I would fight until my very last breath for Madelynn to have every opportunity. The very next morning everything changed.

I am so grateful we made it through this stage. Never Stop Fighting!!

Happy CHD Week!!

TTFN~

CHD Week - Day Three - Siblings

When I found out in March of 2005 that the child I was carrying was going to be a boy, I cried. There was absolutely nothing I wanted more than to have a boy. I already had a 15 month old girl; my life was complete. I realize I am just a little bit biased, but they were so stinking cute too.

Kaitlynn at just a hours old.

Jackson at just a few hours old.

Kaitlynn is so cute. I love her blue eyes.



One of my favorite pictures of Jackson.

I just wanted to live a simple life of raising my two children and give them the best life possible. Three years later everything I wanted for my simple life changed, FOREVER. We found out we were having a third baby. Our third child, Madelynn came with surprises of her own. She was diagnosed with a CHD at 10 weeks of age.

The day I found out, I received a phone call from a doctor and Kaitlynn and Jackson were in the room and saw me crying. They came running over too me and asked why I was crying. Trying to be present for them I had to think fast on my feet. I told them that Madelynn's heart was not shaped like theirs and we needed to take her to a special doctor to fix it. I remember taking my two index fingers and tracing a heart over Jackson's chest. He then gave me a hug. One I will remember forever.

CHD Siblings have a hard road to tow. Madelynn's CHD Siblings are older than her so they have some memories of the chaos. Kaitlynn's fifth birthday was basically cancelled because the day before Madelynn was admitted back into the hospital due to complications after surgery. Jackson didn't believe me she was still alive. 21 days in the hospital to a 3 year old was forever. I can't tell you how many times I had to cancel plans and Kaitlynn and Jackson would wail, "But Mommy you promised!!" Words even today make me want to hide in the corner and cry.

Kaitlynn and Jackson have memories that Madelynn will never have. One of the most treasured bittersweet memories is fishing with Uncle Jason. They were old enough to remember catching their first fish spending a few days with him and Uncle Jon. Madelynn met Uncle Jason before he died but she did not have these kinds of memories. She barely remembers Uncle Jason other than what we tell her so she always knows who he is.



Daddy and Jackson holding his first fish.

Kaitlynn and Uncle Jason holding her first fish.

As a parent your hope is to always give your children all the same opportunities. As a CHD Parent it is 200 times more stressful and difficult trying to balance doctor appointments, specialist visits, tests here and there for your heart warrior and heart healthy kindergartener and preschooler day to day living. There were so many days by the time I would go to bed I just wanted to cry. I had always felt I had failed my CHD Siblings again. IT SUCKED!!

Looking back at all the tears shed, failures experienced and pure exhaustion felt we came out better people. I have learned patience. I have learned failing is okay. I have learned just because daddy does it different, doesn't mean it is wrong. I have learned to stop and savor the moments, however small they may be.

Jackson was three when Madelynn was born and had her open heart surgery. He was in preschool at the time. When it came time for Madelynn to join him I could not afford it. I had to withdraw him and have someone babysit he and his sister while I worked. Jackson did not graduate from preschool. As his mother, EPIC FAIL!! He was the only one not to have that experience. It makes me sad even today.

But something amazing came from what Jackson lost. He didn't have the social experience of preschool or the graduation like all the other 5 year olds. What he gained was a gentle soul. Spending everyday with Madelynn after surgery and learning about her needs he wanted to help her all the time. But this carried over in everything he did. If there was a smaller student in the class he wanted to help them. If someone didn't understand the math assignment he is there to teach it not just give the answer. If I allowed him he would give the shirt off his back everyday.

What would have happened to his gentle soul had he had all the same experiences as his sisters?? As I cried that I failed him.....I later learned that God's plan was much greater. Jackson's loss turned into one of his greatest gifts.

As crazy as he makes me, the joy is always so much greater.



This is the Opie Taylor smile he acquired from his daddy.

My sweet boy and his gentle soul.

 

His first soccer season.

I wish I could say that Kaitlynn had the same type of "AHA" Moment that I did with Jackson. For her this journey has been one more of anger and lots of yelling. Even though Kaitlynn is the oldest she never experienced being an only child. Before her first birthday I found out that we were having Jackson. She has never known life without Jackson.

I love those blue eyes and freckles.

Because of my high stress level I was more often than not very short fused. One day as Kaitlynn and I were arguing about something she looked at me and asked, "Mommy I know you are mad at me but do you still love me??"

She is the reason I wanted to have more kids.

It stopped me dead in my tracks.

My response......."I love you every second, of every minute of every day, no matter what".

I didn't know it at the time but that is what she needed to hear. She has stood back and been short changed so many times. She had to hear "No",  "I'm sorry I forgot", "Can we do it tomorrow". For the longest time I had to stop saying' "I promise". I could no longer promise anything. That realization was very depressing.

Love her....

However, one day it was not turning out to be a very good one, I had to tell the kids I had to cancel our plans and do it another day. I was waiting to hear Kaitlynn get upset with me. Instead she walked up to me, hugged me and said, "That's okay, you still love us right".

Every second of every minute of every day........

I love to watch her play soccer.

Being a sibling of a CHD Warrior is a fight of a different kind. It is hard on everyone involved. The only advice I can give to both parents and siblings is never give up. Never stop fighting. I had to work just as hard for my heart healthy kids as I did for my CHD Warrior. Yes some of it is guilt for all the additional time my heart warrior consumed. But I also had to do it because my heart healthy children deserved everything I had to give as well. Even on the days I felt like I had nothing left to give.

I love you to the moon and back Kaitlynn and Jackson.

TTFN~ 

CHD Week - Day Two - Surgery

As I told you in my previous post we found out about 3 pm on a Wednesday that Madelynn was born, 10 weeks prior, a CHD Warrior. At about 8 am the next morning, we handed Madelynn over to the surgeon and his team of miracle workers. It would be TEN hours before we would see her again.

During these ten hours she would be prepped for surgery, they would create what would become her zipper, break her breast bone, stop her heart, hook her up to the heart lung machine, remove part of her Aorta, splice her Aorta back together, close the other hole in her heart, restart her heart, wire her breast bone together and zip her back up. Piece of cake right.....

A few hours after surgery.

 

While these excruciating hours passed, I was not alone. I was surrounding by my husband (Phil), his mom, his sister, Jacquie, and my parents. We used the hours to research Madelynn's CHD on the computer. I know, I know this is not a recommended practice. However, I felt like Dorothy in the Wizard of Oz. I had just been dropped in an unfamiliar territory via a Hurricane. I needed to take this situation by the horns and get control and quickly. I felt so helpless.

The surgical team left regular messages for us they had started, they had opened her up and there were no surprises. This was a huge concern of the surgeon. They can run test over test over test but until they open the warrior up and physically see what condition the heart is truly in, everything is just a best estimate. We were warned they might have to leave her chest open in case she can't handle the shock of being repaired.

Then we received the message the repair is complete, they are closing her up and the surgeon will come and talk to us. He told us they were able to close her up and he was very pleased with both the repair of her Aorta and closing the other hole in her heart. The next 24-48 hours would be crucial.

While Madelynn was still in the Critical Care of the CVICU.

 

When Madelynn was diagnosed she had almost no blood flow to her lower half of her body. They had no idea how long her body had been that way so her body was now in shock adjusting to the proper blood flow. She remained in the critical care of the CVICU for 5 days. This area of the hospital had a nurse in her room 24/7/365. It was pretty intimidating. Madelynn had a rough 5 days, thinking she had overcome it, she was moved to a standard CVICU room (one nurse for every two patients)

While she was being moved from one room to the other she suffered a collapsed lung and paralysis in her diaphragm. There was also something else wrong and after a 48 hour culture she was diagnosed with strep-pneumonia. She was very sick, she did not want to eat and when she did she would throw it back up.

The day before her lung collapsed; she was so sick.

 

Twenty one days after being admitted to Levine Children's Hospital, Madelynn was released. She was in rough shape. She was anemic, weak, barely eating but her body was accepting the repair and corrected blood flow. Because Madelynn had been living at home for 10 weeks and had already developed a routine at home, the doctor felt she would do better in an environment she was more familiar with so we were released.

Her freedom was short lived. Because of extreme weight loss and eating issues we were back in the hospital three different times over a five week period before she finally turned a corner.

If there was anything I wanted someone to gain from Madelynn's experience it would be there is more to being a heart warrior then open heart surgery. So many of our CHD kids have eating issues, they can be smaller and/or skinner than most kids. Being in an out of the hospital takes a toll on the whole family. Trying to keep up when your school aged child is having surgery can be extremely overwhelming.

Once the crisis mode is under control, families need help finding their new normal. Sometimes families need to be reminded they are not alone. We were so lucky to find Camp LUCK (Lucky Unlimited Cardiac Kids), www.campluck.com . It is so much more than a camp. We found families like us. They spent the long nights in the hospital, they experienced the two steps forward and five steps backward and they can encourage you to never stop fighting.

Happy CHD week!!

TTFN~