Monday, September 14, 2009


I started my blog when Bentley was 5 months old. I thought it would be easier to keep family and friends updated on her heart and surgery. At that time, I had a very hard time verbally talking about her heart (love talking about it now, I probably drive people nuts!), so I found it easier to write and everyone could stay updated at the same time. When Bentley was a day old we were informed she had Tetralogy of Fallot (read the beginning of her story here), this was a shock to us. I had a hard time as any parent does. Once I started my blog, I was overwhelmed with the outreach of my fellow Christian bloggers.. that I did not know existed at the time. They lifted me each and every day and helped me in so many ways. I am so blessed to have each and everyone of them in my life during that time (and now), and even all my new readers now. For the first few months I searched the internet day and night in hopes to find similar situations. I have learned that all heart babies are completely different, but it did help me to read other real life stories. It gave me an idea of what to expect, as well as gave me hope for a brighter future for my child. Words can't describe how scary it is to find out your child has a heart condition.. you feel alone, scared, sad, mad, clueless, blessed (it could be worse), guilty (wondering if it was my fault, what I did wrong), and even out of reach... our job as parents are to protect our children and when you are going through something like this.. it is out of our hands, we have no control.. we have to hand it over to God and let Him do the protecting. There are many support groups out the for parents going through this, but where I live there are none. So I turned to the internet and searched. I have connected with so many heart parents, and I cannot tell you how grateful I am for that. I have a special connection with each one, knowing just a bit of what they go through. I ask them questions, they ask me questions, I have vented to them, and they have vented to me. We have become great friends and it is nice to "know" these other parents so we do not feel so alone. So for this reason, I have decided to set this page up of heart friends. Each of the children below have a CHD, you can click their picture to be directed to their blogs so you can read more about their experience and how they are doing now. Don't be shy, comment, email... it's great to connect and support! And if anything else, these children/adults could always use a special prayer. They are such strong fighters and go through so much in their lives. CHD is a life long journey...

Hypoplastic Right Heart, Pulmonary Atresia w/IVS, Ebstein's Anomaly
single ventricle, Dextrocardia, Mitral Atresia, Transposition of the Great Arteries, and Pulmonary Stenosis
Tetralogy of Fallot
Tetralogy of Fallot
born in 1991 with Single Ventricle, Pulmonary Stenosis, and Transposition of Great Vessels
She is now a freshman in college at Millikin University.

Tetralogy of Fallot
Erin (Age: 25)
Atrial Septal Defect

Single Ventricle (Double Inlet Left Ventricle), TGA, and Pulmonary Stenosis
If there is someone you would like to add, please email me at


  1. Crystal,

    What a wonderful thing you are doing. THis is so sweet.

  2. I think this will be a wonderful resource for heart Moms!

  3. This is an awesome thing to do and might come in handy with me. I find out on the 23rd what is actually wrong with my baby boys heart. Thanks so much for doin this.

  4. I love what you are doing! Even though we do not have any problems with Emma, you never know with future children. These children are such inspirations!!

  5. I just added this blog to Shop in Your PJs for Layla Grace so that we can add these children to our prayers.


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