The Paul Cardall Concert!

Bryan had the fabulous idea (with some "gentle prodding") for us to fly down to Salt Lake City for Paul Cardall's, "Celebration of Life" concert which was held last Monday evening. Of course, I obliged. Our great friends and cousins, Derek & Carly (and baby Lauren) came along too. We had a wonderful time, just two nights away from the kids was long enough, and we so enjoyed the concert, dining out, some touring, and great shopping. (Pictures are a little dark since we couldn't use our flash during the concert due to taping)
Paul's music was so uplifting and inspiring. He is amazing and we felt incredibly blessed to attend such a beautiful evening with 2,500 other people. If you haven't followed Paul's blog, he received a heart transplant last fall after waiting on the list for a year. He survived 35 years with his "broken heart" (which is very similar to Maddie's CHD defect) before finally needing a transplant. This concert was his first public concert since becoming so sick from his failing heart. It was to bring awareness to CHD and organ donation as well as support those affected with CHD in the area. He had many musicians and well-known artists join him as well for the event. Paul is a gift to so many, especially to families affected with heart disease. And...we had the privilege of meeting him! I felt a little bit like a "groupie" when we were headed backstage to meet him after the concert, thanks to Derek and Paul's friend, Sam Payne :) Again, Paul is just a remarkable person and in the few minutes that we were able to chat with him, he brought so much HOPE to our situation. We talked about the Fontan and farming. Perfect for Bryan.There were many heart families from the area in attendance and I was also lucky enough to meet Michelle, Gracie's mom. Paul also played "Gracie's Theme" at the end of the night and I doubt there was a dry eye in the building, especially for those who were touched by sweet Gracie.
We also came home with this super cute auction item! I won it!!! Cowgirl quilt, sign, stick horse, boots and all, just for Moom's. Very fitting for us! She loves it and has been galloping around while yelling "eee-ahh" (yee-haw).
Thanks Derek & Carly for such a fun little trip...we have many memories to laugh about and share for years to come! And thanks Nany & Ba for entertaining our three amigos while we were away, they're still talking about how much fun they had on the ranch.

Happy Hearts Day!!!

I am 1 in 100 born with a congenital heart defect.

I was born with half of a heart.

I had 2 open heart surgeries and 3 cardiac catheterizations by the time I turned one.

My heart may be different than yours,

but it hopes, loves and dreams just the same.

Yes, I've had a few obstacles in my 23 months...

But I am beating CHD.

Pulse Oximetry

I've referred to Maddie's 02 levels or sats many times on this blog. For those of you who don't have to worry about this number and it doesn't dictate to how your child is doing, you're probably unfamiliar with it. A normal, healthy individual has oxygen saturations of 98-100%, above 95% is considered normal. A pulse oximeter is used to measure the amount of oxygen in the blood. It's a painfree test, a little lighted band is wrapped around the end of a finger or toe, like a band-aid. It also measures the heart rate as well. Maddie's oxygen saturation levels are low: 74-76%. This is because her blood still mixes in her heart's anatomy. So she doesn't get "pure" oxygenated blood pumped out to her organs and body like most of us. She appears a little bluer, which is called Cyanosis, and her lips, fingernails & toenails usually have a purple tinge to them. She tires more easily and her stamina is low, especially the more her sats dip. After her third surgery, her O2 levels should improve (hopefully in the 90's) and she'll "pink" up. We look forward to that day!

Many babies born with CHD, even complex types of CHD, are undetected until they're in major distress or after it's too late. We were so fortunate to know about Maddie's heart prenatally. This is why the simple test by a pulse oximeter for all newborns could save so many lives and change the outcome of many. It's a quick and painless test, takes less that ten seconds and is inexpensive. The blood oxygenation level could tell a lot...if it's below 90%, a follow-up test would be needed like an EKG or Echocardiogram. Before taking our baby home from the hospital, many routine tests are done. Why not an oxygen saturation test using a pulse oximeter? It could change the outcome of so many. You can read more about pulse oximetry screening on newborns here.

A mother's heart

Making the decision to have a child - it's momentous. It is to decide forever to have your heart walking around outside your body. ~Elizabeth Stone

I've always loved this quote...every mom can relate to this. It's universal. No one can explain this feeling to you until you become pregnant and have a child. But it seems to intensify for a mother who's child lives with a chronic illness. You wanted this child more than anything, yet you didn't chose THIS for your child.

You are your child's best and only advocate. You know your baby better than anyone else and will do anything and everything for your child. Your "mom instinct" is in over drive. Nothing will get in a your way. You do whatever it takes, however it has to be done, even if it breaks your heart to put your baby through it. You've learned that you don't have a choice and getting your child better is your only focus.

I have had the honor of meeting so many wonderful heart mom's. If you've followed our blog, you've met many of our sweet friends too. Our "Kindred Hearts" blog list keeps growing and the families we meet help shape our focus of living with CHD. This has been such a highlight and buoy for me. I have learned that we can all relate and that I'm not alone in my worries, frustrations and fears. Thanks to all of my heart mom friends...I appreciate your support and the love you share for Maddie. I love meeting new families and thanks to all of you who've introduced yourselves, recently commented, and made a connection with our story. It's inspiring to be part of the heart community and is a refuge for me. Thanks for wearing your heart on the outside of your body.

Points to remember

The major points to remember about CHD...please share with another, spreading awareness is what is needed. Like most of you, we had never heard of CHD until our baby girl's diagnosis.

- Sometimes during early pregnancy, a baby's heart fails to form properly, resulting in structural abnormalities known as Congenital Heart Defects. Although some defects are genetic, in most cases the cause is unknown. A CHD occurs during the first 8 weeks of a fetus' life, before the mother even knows she's pregnant. There is no cure for CHD and over 50% of CHD cases will need an invasive procedure to help fix their heart.

-It is estimated that 40,000 babies with Congenital Heart Defects (CHD) are born in the United States each year (about 8 in 1,000 births). There are over 35 known congenital heart defects and they can range from mild to complex.

-CHD's are the most common occurring birth defect and are the #1 cause of birth defect related deaths. For 1 in 10 babies born with a heart defect, it's a fatal heart defect. 4,000 babies in the US this year will not live to see their 1st birthday due to a CHD.

Behind Your Scar

By looking at Maddie, you wouldn't know she lives with a complex heart defect. She's a pretty typical almost 2 year old...besides the shade of blue she turns from time to time. The only thing that is notably different from her peers is the scar she wears.

I remember the day before her first surgery, I was able to spend about 2 hours holding her. During this time, as I was memorizing every part of her, it hit me that she would carry a physical scar for the rest of her life. That my sweet, innocent, tiny baby girl was going to be cut open with bone shears while doctors "re-plumbed" her broken heart. It felt as brutal as it sounds and was a crushing moment for me. Not only would she have to bear the physical pain of the surgery, she would have a physical reminder of it forever. And not only would she have to do this once, but she was on the track for 3 open heart surgeries, at least, for her life and she wasn't even a week old yet.

In Maddie's case, wearing a scar is normal for her. She'll probably wonder at some point why doesn't everyone have a zipper like her? Her brothers have contemplated this and wondered why they didn't have their heart fixed like their sisters. But maybe the scar is intended to be much more than a physical reminder?

I guess my wish for her is that she'll be proud of her scars. I hope she'll someday realize how special she truly is and what she's taught us. I pray that she'll understand how much she's gone through and focus on the strength she's had to have to endure life with a half-heart. With this, I hope she'll live each day to it's fullest and never lose sight of the love we have for her as well as the love that our Savior holds for her. I hope that she wears it with honor because it signifies so much.

Behind Your Scar...
Sometimes I have those "moments",
When I think...life's just not fair,
Then I think of all you've been through,
And I see the scar you bear.
A faded line right down your chest,
Made with such careful precision,
We wanted you to have a chance,
Could there be any other decision?
And so I trace that "perfect" scar,
Made with the utmost care,
And I realize there is purpose,
Behind this scar you wear.
What have you taught us?
You've taught us how to face a storm,
(Some things are just out of our hands)
Life has no handy guidebook,
(Things don't always go as you've planned)
People come into our lives,
(Sometimes it is just for a season)
But God brings them into our lives,
(And I know that He must have a reason)
Normal, uneventful days,
(The kind that we always hoped for)
These are the days I say, "Wow God",
We just never know what lies in store.
If I can place a feeding tube,
Without even getting distraught,
Perhaps, maybe, I might be...
Much stronger than I thought.
It's okay to be afraid,
And it's alright to cry,
It's okay to feel lost sometimes,
It's even okay to ask...why?
You face life with courage,
(Knowing God set you apart)
Every little thing you do,
You do with all of your heart.
No crystal ball exists for us,
(To see us through each strife)
We only have one wish for you...
An ordinary life.
You've taught us to love one another,
(Helping each other to cope)
You've taught us compassion for others,
You've taught us to never lose hope.
You already have quite a story,
Which you can someday share,
And I can see it's beauty,
Behind that scar you wear.
~written by Stephanie Husted, heart mom to Braeden (HLHS)

Sharing her story

I love talking about CHD's and Maddie's heart journey. (hence: this blog) My goal is that it provides awareness for congenital heart disease, provides hope and inspires others. This year, I submitted her story to the national CHD organization, Little Hearts. You can view her story here.