Yes, that too. I was explaining to a tacky acquaintance once about Lucas's heart condition, and she responded, "he has that wrong with him too?" She meant no real harm, but her words hurt me and I have not forgotten that conversation.
When Lucas was in the NICU after birth, the doctors detected a heart murmur. They did a heart echo and discovered that Lucas has a bicuspid aortic valve, which results in aortic insufficiency (AI). The aortic valve is supposed to have 3 leaves, but Lucas's valve has 2 fused together, making it bicuspid instead of tricuspid. Because the valve cannot fully close, it allows some blood to flow in the reverse direction, causing the detectable murmur. Lucas also has a small Patent Foramen Ovale (PFO), a small hole between the ventricles, which is common in babies (and actually all fetuses have), but it's supposed to close at birth, or shortly thereafter. Lucas's has not closed yet, but is very small. The cardiologist says it's not a problem as long as blood continues to flow from the left to the right ventricle. Yesterday, we were told that the left ventricle is slightly larger (1 mm) than average, so they will continue to watch that.
The cardiologist continues to stress that Lucas's heart condition is MILD. Every time we go, they always ask us if he ever turns blue (!!??!!) or sweats excessively. No, none of the above. At this point, they just want to monitor him every 6 months. The doctor always tells us to continue to treat him like a normal child, with no limitations. But, it is not recommended that he play football, wrestle or do power lifting when he's older. Oh shucks (please sense the sarcasm). In the future, he MAY require medication, and eventually (a few decades?) he MAY need to have his valve replaced, but he also may not. WE'RE NO WHERE NEAR THAT POINT. Nate's maternal grandfather had the same condition, didn't know about it until he was in his 60s, and lived into his 80s, so that gives us hope. But sitting in the cardiologist's office yesterday, with his CI processor on, I know people were thinking, "that too?" Yeah, that too. It hurts me very badly to think about it. I often want to cry when I meet new kids who are perfectly healthy. Even though I know it's ridiculous, I continue to wonder what I did wrong.
Hearing loss is not life threatening, but rather "lifestyle" threatening. The heart is a different story. But his hearing loss is a much bigger deal right now. It threatens communication, which is at the very center of human existence. We visit the audiologist at the "Center for Childhood Communication," not the "Center for Childhood Hearing." Our goal is to provide him with multiple ways to communicate, so that he doesn't miss out. That's why he has a cochlear implant. That's why we're learning to sign. That's why I'm home right now, teaching him to listen.
Progress with the CI is slow, but expected. Because of his age (13 months), I can't expect him to belt out words, considering he probably wouldn't be speaking even if he could hear! He continues to turn to loud sounds, and I constantly point to my ear and ask "Do you hear that?" I also try to talk constantly to him, to expose him to the spoken language he's missed for the past year of life, plus 8 months in the womb (he didn't spend 9 months there). I sandwich signs with words - say the word, say the word and sign it, say the word again. And, we're still meowing at the meow meows all the time (my favorite... it will never get old!). His speech therapist and teacher of the deaf are great. I look forward to speech therapy today for some new ideas.
I'm anxiously waiting for him to make more sounds though. He used to be so chatty, but it stopped around Christmas, and now (other than his crying/fussing sounds) he makes this one strange sound that's indescribable. It's a guttural sound, that sounds like he's clearing his throat, or sick, or choking or something. It's awful, and kind of embarrassing. My sister thought he was going to throw up, my grandmother thought he was choking, and others just don't know what he's doing. I can't wait until he gets rid of it.
I don't want Lucas to grow up too fast, but sometimes I wish I could see 10 years ahead, and know that everything will be alright... that he can talk, that he can walk (not quite there yet), that his CI is successful, that his heart is still on "monitor-only" status. But I know I can't, so I continue to cling to hope and lots of CI success stories to help me through.