Today our biggest fears were confirmed. Luka has a Congenital Heart Defect. It's called Hypoplastic Left Heart Syndrome. I'm still learning so here's a website about it.
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002096/
Yeah. It's pretty fucking serious...And yeah...I'm pretty fucking shattered. It hurts. Really bad. I'm scouring the internet, especially Facebook, for families that have HLHS kids. I want to know everything there is to know about my son's heart defect before he is born...I want to understand what the fuck is going on. My little bitty man is safe swimming in my belly. As soon as he's born, shit gets bad for him. He's in there, happy as can be, totally unaware he has a heart problem. He doesn't understand that as soon as he is born, he will endure a world of medicines, surgeries and strangers touching him...I won't get to hold my son when he is born. He will be taken away from me and instantly started on medication to stabilize him. This isn't fair. It isn't supposed to be like this. WE PLANNED this little dude. We wanted him before he was even created.
Luka Ray Thomas McDonald, you better pull through.
Mommy, Daddy, Ashton and Zephyr all love you very much. Stay safe sweety.
Ashley, about 20 years ago when my cousin was born, my aunt explained to us that Joey was born with only "half a heart". He was not expected to make it very long. Today, he is still with us. Now, to be honest he has undergone over half a dozen surgeries as you've probably read that some of the corrections they make need to be readjusted as the child grows. He can't run marathons and he does have nerve damage from poor circulation and low O2 levels, BUT he is still here. He goes out with friends, he plays video games, cracks jokes and because of how fragile he understands his life to be, he is a kick-ass no bullshit guy. If it doesn't add joy to his life, he lets it go and is a better person for it.
ReplyDeleteNow, Joey is on a heart transplant list and has actually been called down to PGH twice in the past year as the 'back up' transplant. Please know that you live 2 hours away from not only one of the premier children's hospitals in the world, but also a leading cardiac center. Also understand that my cousin's condition was first diagnosed 20 years ago and massive leaps and bounds have been made in the field since then.
You will not have a perfect child, but his chances of living a long and happy life are VERY high.
Lots of love to you and your family.