Walk with the Heart of a Child 2012

This year's walk was amazing! I wasn't sure what to expect, but it turned out to be so much fun! We had such amazing support for Mylah both from virtual walkers and the ones who joined us the day of the walk!

We began the day by rising early and leaving to the Heart Walk around 6 a.m. My kids, who usually rise early, chose to not wake up until right before we had to leave that day. It made for some grumpy tired kids, but we worked it out. We also didn't have Neil with us. He had to work and we were so sad that he couldn't be there. Mylah missed her Daddy a lot!

We arrived, checked in, grabbed our T-shirts, and put on our Team Mylah pins.
We took a few pictures of those of us that were there already and then headed to the Kids Zone!

{My Dad & Mom {not sure why they both look mad}, Me, Mylah (wearing her CHD shirt), Rylee and Dallin}


{My beautiful kids and I}

{My besite Kati, Me and the kids}



They offered a few free things to do in the Kids Zone. Dallin was excited to have his face painted, but they ended up only having slightly girly picture options. Rylee decided to get butterflies. She was very overwhelmed by all the people and everything going on, but braved the chair and had her face painted.





Dallin instead waited in line to get a balloon character. It was a long wait, but worth it. He had the lady make him a sword and he loved it! Rylee also had hair tinsel put in, and a princess crown made from balloons.



The walk was about to begin so we quickly took a few more pictures.

Team Mylah
{Kati, Steve, Margaret Ann, Christopher, Travis, Kim, Burton, MaryAnn,
Mylah, Me, Jonathan, Anella, Dallin, Rylee}


Grandma and Grandpa H. and Mylah


Grandma and Grandpa C. and Mylah


The Keys Family and Mylah
{Christopher, Travis, Mylah, Kim, Jonathan and Anella}


After pictures, we were off! The walk was a 3k, basically around the entire Mall. It was fun to watch other Teams, rally together for Heart Children and spread awareness about CHD's. There was a wonderful team spirit in everyone and I was overwhelmed by the amount of love I felt. Love for Mylah and her health, love for other heart families who's babies didn't make it, love for a community who believes that we can make a difference and help fund research for CHD's. It was such a fabulous experience. I am so glad we decided to do it!









Here's our sweet Heart Baby! She was playing with her toys for most of the walk and then fell asleep about halfway through. We were so proud to walk with her and for her!







During the walk there were a few local mascots that joined the festivities and stopped to take pictures with the kids. Rylee wanted NOTHING to do with the characters, but Dallin had fun getting his picture taken!



At the end of the walk there was a performance by Tim McGraw!!! We only wished that were true, it was an impersonator, but a pretty good one! We rocked out to the music and then they announced the winners of each of the contests they had for walk. Gifts and Raffle Prizes were given away and we all enjoyed water, granola bars and apples. Yum!

"Tim McGraw"


The End of the Walk


Even Mylah got a snack and water!



Here's me and my sweet girl, I love her so much and am so blessed that we were able to do this, to honor her. I can't remember what life was like before her and living with a child who has a CHD. I can't remember living my days not wanting to create awareness, raise money for research, and spread the word. I am an advocate for my daughter and only I can help heal her!



Thank you again to everyone who donated to Team Mylah and our local Heart Foundation. Thank you for your love and support of our heart baby! We can't wait until next year!

This Past Week's Appointments

February 24th 2012 - Today my Mom and I took Mylah to her 4 month Pediatrician appointment. She weighed 15 pounds and was 25 inches long. She is only up 1/2 pound from last month and her Pediatrician is not worried, but concerned. She says we will just watch it and add another feeding to her day. The poor girl had to get 2 shots and take one by mouth. She cried, of course, but was fine after a few minutes.

After lunch we were off to take Mylah to get her final Synagis shot. The poor girl didn't like that one either and took it like a champ. My heart broke that she had to have 3 shots today! We meet with her Cardiologist in about another month to determine when we will do her full heart repair. As scared as I am, I am ready to have it over with.

Lessons Learned

Here we are at the end of CHD Awareness Week. It has been such a wonderful celebration of life, Heart Warriors, and Heart Angels! I am grateful to the fabulous blogging world and their support and love and stories. I have learned so much this week and in these last 5 months since finding out about Mylah's heart. Here are a few of my lessons learned;

♥ I have learned that having a child with a Congenital Heart Defect doesn't define them. That child can grow, develop, learn, create memories and thrive just as children without CHD's do. Their heart problems only cause some problems to their physical bodies, but their spirits are strong! Mylah reminds me daily that she is a fighter. Each morning I hear her sweet babbles and gurgles coming from her crib. I rise to get her and I am always greeted by the warmest, sweetest smile. It melts my heart and I never want to forget that though she has been through so much, she still smiles! She is such an example to me of endurance, and will never be defined by her defect.

♥ I have learned that every heart is different. Every heart defect is different. Every story is different. These children and babies are fighters and as each of them live through the life that our Heavenly Father has chosen for them, they defy the odds. They amaze each of us. Your child can have the same exact diagnosis as another, and yet their story can end differently than your child's. Every one of them is unique. Mylah has proven that. She has a strength beyond her few months of life, beyond that of any other 4 month old I have ever seen. Her strength has brought her to this point. She is healthy, living, breathing, learning, growing, developing, teaching, loving, and smiling. I am grateful for our differences in story, they teach us all.

♥ I have learned to have empathy. I like to think I possessed this quality before Mylah's birth, but now I have a stronger desire to comfort those that need comfort. To help those heart families who struggle. To let each of you Heart Mom's know that no matter how hard it seems to be getting, there is a purpose for the path you are taken on with your Heart Baby. There is a reason why your Heavenly Father sent them to you. Look for those reasons, learn, and know that I know how you feel. I have lived with the same heartache, fears, worries, and stresses. I am grateful to be able to feel this empathy and help others.

♥ I have learned to savor the moment. Every moment. The little moments. All to often we speed through life just trying to get through the day. Some of my days are like this, but since Mylah's birth, not very many are. When my kids act up, when I get frustrated, when I am just plain exhausted, I to think, " What if my child wasn't here?" "What if I wasn't able to share this moment with them?" Life would be horrible with out my three beautiful kids. I try to be kinder, speak softer, love more, laugh often, and spend as much time with my kids while they are young, as I can. Mylah helped me realize how precious life is. Savor EVERY moment.

Lastly, I have learned patience. Patience with myself, Neil, the kids, and life. Patience with my Heavenly Father. He knows what he is doing with my life. He knows the direction he wants it to go. He knows. I have to trust Him, be patient, and endure. It is all for MY good.

I am so grateful for the lessons I have learned these past few months. I am blessed to celebrate CHD Awareness Week. To have had a reason to show my support, and create advocacy and awareness! I am thankful for my sweet Heart Warrior Mylah, who is a fighter, and amazing baby girl. I am truly blessed.

Happy Heart Day everyone!

~Lara

CHD Awareness Week: Day 7 Heart Warrior Maxson

Today is the final day for CHD Awareness Week. It went by too fast!

Here is the last story I will share for CHD Awareness Week.

It's about a handsome boy named Maxson. Enjoy!

Here's Maxson's Story:

Maxson's Story

Follow Maxson and Read his blog here:

Team Maxson

CHD Awareness Week - Day 6: Heart Warrior Anniston

I found Anniston's story on Pinterest as well. It is has been so amazing to read and hear other's stories and realize that there are so many families going through what we have and will go through.

Here is Anniston's story:

Anniston's Story

Keep Updated on her progress:

Martin Family Times

CHD Awareness Week - Day 5: Heart Warrior Megan

I discovered Megan's story through the Pinterest Board - Faces of CHD. She has grown up into a beautiful girl and gives me hope for Mylah's healthy future!

Here is Megan's Story:

Megan's Story

Megan's Family's Blog:

The Dance Five

CHD Awareness Week - Day 4: Heart Warrior Trey

Thanks to the Faces of CHD on Pinterest, I found this Heart Warrior's blog. Trey is such an adorable little boy and is just a little older than our sweet Mylah! I have read his story and was touched. He is such a brave little boy!


Here's Trey's Story:

Trey's Story

Keep reading his blog:

Trey Heart

CHD Awareness Week - Day 3: Heart Warrior Mason

Here we are, day three, already my heart is so full of happiness! I have shared such wonderful stories and have loved being involived in CHD Awareness Week! There are so many fabulous blogs and pins on Pinterest. It's amazing what we can do if we join together and try. Let's keep creating awareness!

Here's today's Heart Warrior - Mason. His blog is another I found after we found out Mylah's diagnosis. I feel blessed to have such awesome blogs to read! It really helps me.


Here's Mason's Story:

Mason's Story

Read Mason's Blog:

Mason's Journey

CHD Awareness Week - Day 2: Heart Warrior Claire

Day 2 of CHD Awareness Week is here!

I am so happy to share another story with you. Today's Heart Warrior is Claire.
Found her story while searching the internet as well. She is such a beautiful girl, and gives me hope for our own TOF baby, that she will grow and develop as well as Clair has. Enjoy!


Here is Claire's Story:

Claire's Story

Follow Claire's Blog:

Baby Claire's Blog

CHD Awareness Week - Day 1: Heart Warrior Andrew

Today is the first day of Congenital Heart Defect Awareness Week!
I am so happy to celebrate this week and to highlight some Heart Warriors.
I will be doing a post everyday for the week sharing their stories of happiness, triumph and fight.
Whether or not you are raising a child with a CHD, these stories will touch your life.
Please do something today to remember or help a child with a CHD.
Donate blood, donate money to your local Heart Foundation, join a team for your local walk, celebrate all we have discovered and the many more years of research and help we can provide.
Here is today's story - Heart Warrior - Andrew H.

I first found Andrew's blog just cruising the internet after Mylah's diagnosis. I am grateful to have become friends with his Mother through her blog and hope to continue our friendship as both of our children battle CHD's!



Here is Andrew's story:

Andrew's Heart

Follow Andrew's Blog, Family and Story Here:

A Little Monkey Business - The Huegel Family

Cardiology Check-up

Yesterday I took Mylah to her Cardiology appointment with Dr. Thomas. Before seeing him she was weighed, measured, had an EKG done and had her Pulse Ox taken. She weighs 14lbs 3oz and is 24 1/2 inches long. Her EKG was normal and her O2 Sats were at 82/83, which is perfect for her!

We waited a little bit and then finally saw Dr. Thomas. He did an ECHO of her heart and said that everything looks really good. Her Pulmonary Artery is at a 62 gradient and was at a 60 post-surgery. Basically this means that it is becoming a little more restricted in that area. Thankfully her shunt is doing it's job and looks good.

Towards the end of the visit, we got down to business and discussed Mylah's future surgery. He had originally wanted to get her to 1 year old before her full repair on her heart, but now he is saying that he wants to do it in the next few months. One, because we now live 3 hours away from the hospital and Cardiologists. Two, because she has been gaining weight at an amazing rate and is doing so well there. And three, because it is just better all around to do it, get it done, and have it over with. Well from our perspective anyway.

So what does that mean? He doesn't want to see her for 2 more months. He does, however, want her to have a Pulse Ox taken at the end of this month when she sees her Pediatrician. If it is below 80 he needs to know, if it is above she is fine. He will just see her at her next check up, do a follow up EKG and ECHO and see where we will go from there as far as scheduling her surgery.

Pre-Op procedure for heart surgery requires a catherization. This is where they will take a camera up her femoral artery and look at her heart and get an idea of how they will go about her repair. She will most likely have this done the same week as her surgery. So that will come up in a couple months too.

For now, Mylah is healthy, oxygenating very well, and growing at an amazing rate. Dr. Thomas said she is almost the weight of most 1 year old heart babies and she is only 4 months old. She is our superstar and we are so proud of her! We will see what the next couple of months will be like and hopefully figure out when her surgery will be after her next check up on April 2nd!

4 months old

Mylah is four months old today! What a miracle that is.
She is healthy, happy, and thriving.
We pray for continued health for our heart baby.



Here are Mylah's four month stats:

♥ Mylah weighs 14lbs. 8oz. (95%)

♥ She is 24 1/2 inches long. (90% up from 75%)

♥ She loves to sit up, laying down doesn't do it for her anymore, she just complains about it.

♥ She also loves to stand with support from whoever is holding her. She has such strong legs!

♥ She has started grasping toys and objects and loves to sit on your lap and help you with anything your doing.

♥ She recognizes her name and will turn her head to look at you when you call her.

♥ She follows you with her eyes as you walk past her.

♥She smiles all the time, she is such a happy baby.

♥ She coos, laughs, and squeals like a Raptor (says her Daddy).

♥ She only fusses if she has to lay down, if she is hungry, or if she is tired.

♥ She still prefers her thumb over a pacifier.

♥ She has to be in her crib, in her room, with the music and fan going to take a good nap.

♥ She sleeps from 7p.m. to 5 a.m. every night.

♥ She loves her brother and sister and starts smiling and talking as soon as she sees them.

♥ She growls. Yes growls, like a tiger. It's hilarious and SOOO cute!

♥ She still has a bald spot and crazy Elvis hair. I. love. it.

♥ She is such a joy to our family and we wouldn't be complete without her.
We pray for strength as we know her second surgery/full repair will be in the near future. We are hoping we can wait a few more months, but we will see what the Cardiologist says at her appointment tomorrow!

Happy 4 Month Birthday Mylah Leilani!