One of many.

I emailed this woman to get an insight on her journey with HLHS. She's got some empowering words and not even have met her, I can feel her strength that one day I hope I have even the slightest amount she progresses.

Kelcie,

Thank you for emailing, that is exactly what I hoped my blog would encourage. To get straight to the point- there isn't ONE day that goes by that I am not thankful for having Jack and doing the surgeries. In my view (and I'm not a crazy pro-life person or anything) but in this case- they have a really good chance of living fulfilling lives. They should at least be givin a shot.

Particularly now- even in the past 7 years they've made GREAT strides with HLHS and the surgeries involved. And it's only around the corner that stem cell research will provide them with their own hearts if need be. After the stages of surgery it's years and years before we need to worry about transplants and such. Right now it's as if we have a perfect, healthy little boy. He know's all about his heart and knows how lucky he is. He enjoys life by the minute and having that example in my life is incredible. His energy is through the roof- it scares me to think what he'd be like with ALL 4 chambers!

Obviously- this journey is hard. It wasn't fun sending him off into the OR and knowing he was on by-pass and watching him lay in the hospital all those times so uncomfortable. But he doesn't remember any of it. I almost get sad that he doesn't because it made him so strong and it's responsible for his incredible character. WE remember. We will never forget, and YES it is horrible to go through, but if you looked at your two-year old, I know you would do anything for him and that is exactly how you will feel with your new one. People hear our story and ask all the time "how did you do it!?" and it's just like anything else for your children (ie: LABOR...) you would do it again for them if you had to.

I'm glad you found me on the internet- but I do have advice to not BELIEVE everything you read or take it all into account because there are so many different cases in HLHS. Each little human is different and each doctor is different so don't parallel yourself or your son with others. You will get to know him and his needs and his abilities and you will be able to help him along.

I can't sit here and say "everything is going to be fine"- but I CAN tell you that whatever choice you make will be worth it, and will be right. You are the mom, you know what is best. These kids truly are incredible and strong, and resilient. I am inspired every day. Jack is our only right now, and we have been trying for almost 5 years for another. I sometimes find myself saying "I'll even take another HLHS baby... if I can just have one more.."

We are blessed to be mother's of these amazing heart babies, and REALLY- the medical field is staying ahead of us. 15 years ago they couldn't even identify HLHS in utero, the babies would go home and it was too late. We are so lucky to have such advances and research and equipment. I really believe your baby has a great chance of survival in a time like this.

I wish you all the best- I hope I've comforted you and not freaked you out! :) Take care, keep calm.. and stay in touch.

~Lisa