A look into one mother's journey raising a cardiac baby...
Info on Non-profits and helpful organizations that assist families of cardiac infants.
Journal entries from our days in the hospital with Rosemary.
...I have a "How To" video in changing NG and G tubes for parents coming in March...It's just not easy to have to do either.
Thank you for visiting, I hope you have found something useful to pass along. Feel free to chat, email, ask questions or just check in every once in a while.
Thank you for visiting my site.
Hometown...Homer City, PA
My name is Lori Irvin and I am raising a baby with HLHS, Hypoplastic Left Heart Syndrome. I've created this website as a way to fulfill something that I never had at the beginning of this journey, a collaborative site of resources and personal perspective of raising a baby with HLHS. It's a first hand look at what it's like to go through this.
I want my site to serve as a meaningful translation for other parents raising children with cardiac disorders. This experience is difficult, but it's easier if you have something or someone to relate to. If you or someone you know has a child with a cardiac disorder, my hope is to provide enough content to be useful in helping families cope with and understand this disease and its affect on the family. My BLOG sections are particularly intended for this purpose. There you'll find my accounts on the emotional aspect of this, the realities that it brings to the table, and some segments of entertainment and sources for hope as well. My intention here is to provide some breathing room and reprieve during difficult times.
When I found out that I was having a baby with HLHS, I had no idea what it meant. Even if you're a doctor who knows exactly what it means physiologically and medically, you can never know the amount of emotional and mental energy that it takes to withstand these circumstances and the will of God. You have to believe that your love and all your best is just what the doctor ordered.
This has probably been one of the most spiritually and emotionally driven times of my life. I would never have gotten through those pain staking nights in the CICU or the numerous van rides to the hospital in the middle of the night without the faith and support of the people around me. I have to thank God, both sides of my family, the doctors and nurses that kept Rosie alive and the love of my life, Drew. He made me feel secure when I doubted myself in my ability to be the best for Rosie. We trusted each other and, thank God, made the right decisions for her.
We're almost to the finish line. One more surgery to go to complete the 3 step process to reconstruct her heart. It seems so complicated, but you really leave the fixing to the doctors and surgeons and the guidance from above. It's very difficult at first to wrap your head around what having an HLHS baby actually means...especially if you have more children to care for, as we do.
To try and put this all in a nut shell, I entered a tunnel the day she was born, looked toward the light and started walking. And from that day, to her 3rd day of life when she had her first open-heart surgery, to the month and a half hospital stay where we almost lost her, to this moment as she sleeps soundly in her crib, I just keep walking.
I'll never stop being amazed at how resilient this kid is. She's simply amazing.
I chose risk to have her, and chose love when she lived. That's where I've been ever since.
Thanks for stopping, I hope you come back and check in on Rosie!