With CHD awareness week coming to an end, I wanted to end on a personal note.
How does this all affect the mom's and dad's? Our sweet little babies are the faces of CHD, and adorable faces at that, but what about the mom and dad trying to hold it together?
When Amelia was diagnosed with HLHS, I had no clue what was in store. I mean I knew the facts, I heard the stories, but no one can prepare you for it.
Since Amelia's birth, I have nightmares. I wake up thinking that she's still on ECMO, or that she is in the middle of an episode that she won't snap out of, so they try to attempt intubating her, with no success. I wake up thinking we are still sleeping in the hospital. As you can imagine, I also have the gut wrenching dreams that she is no longer alive, where a dr tells me she died, or that I am at her funeral.
At least once a week I wake up thinking Amelia is really sick again.
She isn't, and praise God for that! I get to thank God every time, because she ISNT sick anymore.
I will always worry about her. Recently I watched a movie, where someone's daughter died while giving birth because she had a CHD. I hear those things and can't get it out of my head. I am constantly thinking about her upcoming surgery.
She will always have half a heart and will always run the risk of something going terribly wrong. I am always scared.
Amelia's lungs aren't great, her LPA is small, and don't even get me started on her SATS taking a decent dip in the last 6 months. There will always be something to worry about.
That said, I have a large community of women who live the heart mom life. They know and understand and I am so grateful for them. When Amelia was diagnosed, an organization called Sisters-By-Heart sent a care package to us and gave us links to blogs that gave us hope. If you're searching for a way to help the heart moms and dads, www.sisters-by-heart.org is an awesome organization to give to, because they were the first glimpse of hope we had.
If you're looking for ANY organizations to give to I recommend giving to your local Children's Hospital with a Pediatric Cardiology unit. Furthering research and bettering equipment in the units is important, because it raises our chances of bringing our babies home. Your local Ronald McDonald House is also a great place to give to.
I am not looking for sympathy, I promise, just want to give a clear picture of what it's like to be a heart mom. We are so grateful for Amelia and would choose her every single time. She brings us such joy.
Thank you, everyone, for your continued love and support.
Love,
Kelly
