Friday, January 30, 2009

That too?!?

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.


Ambulance Mommy said...

Maybe they weren't thinking "that too", maybe they were thinking "those parents are amazing, I could never do that"

I remember when my son was in the NICU, and the "only" thing wrong with him was his dangerously low blood sugar. I was watching the parents at the isolete next to us with their 2 lb baby girl, and thinking how brave and strong they were, and how I could never be like that.

Now, I have to hold my son down to get his ears checked, and I have to hold him down for IV's so they can sedate him for MRI's, or testing, and I can't even imagine how I do it. I can't imagine how parents who have to do more do it.

You may just be their hero, and they don't know how else to say it, but the awkward "that too?"

Lucas'Mommy said...

Thank you for your comment, Ambulance Mommy. I appreciate that perspective. It's hard to stand back and look at it that way sometimes, so I sincerely thank you...

Connor's Mom said...

As a mother of a child who has a wide variety of special needs, including being HoH and having heart defects, I run into this sort of thing pretty often. Some of the comments we've received that have earned a place in my Hall of Infamy include:

"So can you have any normal children, or will they all be like him?"

"The doctors make all that stuff up. You should learn how to discipline. If you spanked your child, he wouldn't have any of those problems."

"Real Christians don't have kids like that. You must not have prayed hard enough."

I think that some people just aren't sure how to react to children with any special needs at all. I always kind of figure that they probably haven't had any experience with special needs children (and secretly thank God that Connor is our son and not theirs).

I think that almost all parents of special needs children struggle with the idea that somehow we caused our child's special needs at some point or another. It's something we all have to work through on our own. I certainly had my share of them, even after we discovered that Connor's issue was genetic. Just know that you aren't alone in having with those feelings.

Sounds like you're doing a great job with the auditory sandwiching and giving explanations for sounds! Connor doesn't have a CI, but when he got his hearing aids, he completely stopped making noises and using all of his signs for almost a month afterwards. I think that everything was so overwhelming it took that long for him to make sense of all the new information. Once he adjusted to the new sounds, then he suddenly started making noises and signing again. It just took him a while.

Now though he's non-verbal due to his other neurological issues, he loves experimenting with new sounds. Currently his favorite sound is a grunting noise that sounds like, um, he'll need a diaper change in fairly short order. Let's hope our sons move on to less embarrassing noises soon!

mbishopp said...

you will be surprised no matter if your raising a healthy child or one with more challenges to tackle, the days are long and the weeks are short. you are giving Lucas everything you know to give him, you're an amazing and ambitious mom.
his language nerve will spark and before you know it you will not remember these times of waiting, and frustration. do you remember the first months of pregnancy? the months you swore you would NEVER forget? they are gone and so is the queasy feelings. time will pass and it can only get better from here.

Anonymous said...

Hang in there. People just don't think. I know with Morgan they say some of the same stupid things. We try to ignore and love to teach about implants but people that have "perfect kids" have no idea. It is good Lucas was given the perfect Mommy! I think I see special needs kids having such special parents! God knows what he is doing when he chooses which child goes to whom! Morgan made those same funny sounds that Lucas is making. They will go away! Hopefully soon.

Sandra said...

Our oldest daughter Jazzie is deaf in both ears, wears glasses, had two sets of baby teeth which needed to be pulled and has asthma. Not at all as serious as your little guys issues, but I can honestly say that I would not want to change a thing.

Jazzie would not be Jazzie without any of her issues. I remember starting out when she was 16 months old and newly implanted. I wondered if she would ever talk.

She is now six years old and mainstreamed into first grade this past fall. She was at an amazing oral deaf school for four years. She is doing wonderful. Her speech is just like any other 6 year old (most people that don't know her, don't realize she is deaf). She is in the gifted program at school, excelling in reading and math.

Like you, I did a lot of work with Jazzie when she was younger and we had a lot of appointments with speech therapists, auditory therapists and deaf mentors. It was all worth it. Because of all of it, Jazzie is where she is today and I am sure your guy will be making huge progress before your very eyes.