My story short... I became a heart mom a year and a half ago. We had a very normal pregnancy... the day after I gave birth to my 3rd child we were told my daughter had a heart condition called Tetralogy of Fallot. It is a complex heart defect that is made up of 4 defects and requires open heart surgery for survival. It came completely unexpected, my husband and I were devastated as any parent would be... but I seem to have had an extra hard time dealing with it. I was a complete mess. I could not even tell anyone about it. I did not verbally speak it to anyone other than my husband until Bentley (my daughter) was 5 months old. I did not even tell my own sisters, I had my mom tell them along with close family. No one else knew about it. I did not tell my best friend until Bentley was a couple months old, and sadly I sent her an email to inform her. I was up every single night until 3 and 4 in the morning (for months) researching Bentley's heart condition just trying to find information to give me hope. I came across many repetitive websites, but hardly any that included real people telling their own stories. When you go through something like this, there is a big difference between informational websites and sites that include real stories told by real people with real experiences. I have heard the informational part time and time again, but I want to know real stories, I want to talk to moms who have been through this and ask them questions, I want to hear their experiences, etc. and I was having a hard time finding this. Overall, I was just distraught (as all parents are when learning your child has a serious medical condition)... Because it was hard for me to verbally speak the words I decided to start my blog to keep family and close friends updated when Bentley was 5 months old. It was hard, I just felt if I did not say the words the condition would go away...
A friend of mind ended up leading me to Kelly's blog at Kelly's Korner. She just had sweet Harper and she was going through a extremely difficult time with her in NICU, baby Harper was fighting for her life. I was inspired in so many ways by Kelly. Her strength amazed me, her faith amazed me. I learned I was really missing the Lord in my life. I talked to Kelly a few times about Bentley and she reminded me of what I already knew... He is there, and He will protect her. Kelly holds a special place in my heart and she will never know how much she has helped me. She helped completely turn my outlook around.
The more I would blog, the more new heart parents would comment or email asking the same questions I had, that I could never find. See, there are many (in person) CHD support groups out there, however.. there aren't any in my area. These support groups are amazing, but I was lacking that extra support from real people that went through similar things. I had no one I could call or email... so I would just search online. There are so many people out there like me.. I know because I hear from them every day. This IS my personal blog, but it has also turned into more than just that. I cannot tell you how many people google "baby heart surgery", "chd surgery", etc. and land on my blog. 99% of the time, these are new heart parents are looking for "real" stories and experiences just as I was. They find not just 1 here but many. Not only can they can click to read Bentley's heart journey from the links in my navigation bar up top, but they can also connect with other heart parents here. You can also see that link above in my navigation bar. So many of us are not looking for professional websites that inform specific details of the condition.. we have already heard/read these... they are all the exact same, we want to read something more REAL. Although each heart story is completely different, we just want to know what to expect and see for ourselves that our children do have a chance at a long a normal life. So I am no organization, this is my personal blog... but I do gladly support any heart parent that lands on my page and try to help them any way I can. And I think it's safe to say that anyone on the "more heart babies" link up above feels the same otherwise that would not have willing added themselves there.
A good addition to this post, is my very last post. Shaun White (2010 Olympic GOLD Medalist) was born with the exact same heart condition as my daughter Bentley. I actually just found this out yesterday. He truley has an inspirational story for any heart parent. You can read about that here.