Has laid her son on an OR table and kissed him as he fell asleep. I have handed him to a surgeon knowing that they would stop his heart , and prayed it would beat again. I have learned more than I ever thought possible. And celebrated victories that I never would have thought of. I have walked a road I never knew existed. I will walk this road forever. I am a Heart Mom. - unknown.
I don't know who wrote the above, but I stole it from Becca at The Bates Motel . She posted it on her facebook profile. I "borrowed" it for today's blog post.
Happy Heart Day.
Today, four years ago, Aiden underwent his first open heart surgery . Though I didn't lay him directly on the surgical table. I handed him off to an anesthesiologist. I did kiss him and tell him how much I loved him. The surgical nurse would keep me informed of how surgery was going, all except bypass. I didn't want to know when my child's heart was going to stop beating. I did pray that his heart would beat again, though it didn't. Not on it's own. Not for 5 days. For 5 very long days, Aiden was hooked up to an artificial heart, lungs and kidneys. ECMO.
I have learned more than I ever thought possible. Through the course of 2 OHS's, I know how to work monitors and pumps. I have had my crash course in both nursing and cardiology. I know more medical terms than I care to know. Aiden's heart has been basically rebuilt from scratch. A good portion of it has been re-created by his surgeons.
I have celebrated 1460 Happy Heart Days since that day 4 years ago. Days that I know I should not have had. You see, Aiden was not supposed to have survived. His surgical team could not give him the prognosis of 95% chance of survival as is common with defects similar to what Aiden has. Aiden had only a 3% chance of surviving. We celebrate everything here. Words, steps, school, imaginative play, handwriting. Things that a lot of parents take for granted. I can't take those things for granted. Even sitting here typing this, my throat gets tighter, the lump gets bigger, the tears start flowing and my "heart" hurts for his.
Yes, I still say Aiden "has" heart defects. For the rest of his life, Aiden will be a "heart kid". As long as he lives, he will see a cardiologist every 6 months at minimum. Any procedure, even one as simple as ear tubes, is more complicated because of Aiden's heart. Special precautions have to be taken at all costs. Dental cleanings even. Several years ago, the dental association and the cardiac association changed their guidelines as to antibiotics before dental cleanings. Nope, not for Aiden. His dentist, who specializes in children with special needs isn't even qualified to put caps on Aiden's teeth. We have to see another dentist for that. Yep, that's how complicated it is. As Dr. Pediatric Cardiologist puts it... "well, it's Aiden's Heart".
For most heart moms, a year or two after their child's OHS, the battle is won. They get to hear the wonderful news of "see you in a year". I'll never hear those words. I wanted to. But I won't. Ever. I know that yet another OHS looms in the future, for valve replacement. His valves have been repaired, twice. But that was more like putting duct tape over a leak. Those leaks are still there. We're going to have to fix them sooner or later. Hopefully, not for a really long time, but that's not for me to determine. If it were up to me, we wouldn't need another surgery. Not now, not ever.
I don't have those warm, fuzzy feelings about my child's open heart surgery, I probably never will. It's like that first OHS opened a can of unknown content. One that keeps opening up every few years. Yes, Aiden was given back to me, but with conditions. Aiden's heart is too complicated.
Yes, this is a road I will continue to walk. I didn't ask for this, but it's what I got. I got what God thought I needed. And I'm fine with that. I always have been. At least I keep telling myself that.