Mixed news from the cardiologist.

[rivka]

Alex's heart murmur is "innocent," as her pediatrician suspected, meaning that nothing is really wrong and it will probably go away on its own, in time.

However.

There was an abnormality on the EKG. According to the cardiologist, it could just be a normal variation. Or the left side of Alex's heart could be slightly enlarged. She's going to need an echocardiogram to be sure. The test is noninvasive and innocuous - it's just an ultrasound of the heart - but because they'll need her to hold still for an hour, she'll have to be sedated, which in turn will mean that she'll have to fast for six hours, a long time for a baby. But it's okay. We'll get through it.

The cardiologist repeated what Alex's pediatrician said - that if she had any kind of serious heart disease, we would know because she would be weak and growing poorly. Even my greatest maternal paranoia can't apply either of those terms to my tall, pot-bellied, active little girl. But honestly, anything short of "your daughter's heart is perfectly normal" is not something I can feel okay about hearing. I am not panicking, but I am going to be worrying about this until we get through the echo.

I've just spent fifteen minutes or so with Dr. Google, and have figured out that we're probably talking about hypertrophic cardiomyopathy, an inherited condition in which the heart muscle cells have an abnormal arrangement. Apparently a lot of people never even have any symptoms, and only find out about it when a family member gets it and they test out the rest of the family tree - or it's diagnosed incidentally because they're looking at, just for example, a heart murmur. Other people have symptoms like shortness of breath or chest pain with exercise, palpitations, light-headedness. Some people develop serious heart disease, but that doesn't seem to be very common. Sometimes hypertrophic cardiomyopathy requires treatment with drugs or surgery, but peope with minor or no symptoms don't need any treatment at all.

We could deal with that. If we had to.

Comments

[kcobweb.livejournal.com]

*hug* Listen to your instincts - you know that your little girl is mighty and strong! And, well, give her lots of extra hugs for us.

[eeyorerin]

I found the heart noises that the echocardiogram recorded to be really fascinating to listen to when allanc had his. The sonogram tech also pointed out the different parts of the heart and played back some of the recordings, which was really interesting and also very reassuring.

I'm hoping that Alex has either no problem or a very minor problem. I was just diagnosed with a congenital kidney defect at age 29, so things like this really can go undetected until they cause problems or another family member develops problems.

[treadpath.livejournal.com]

You guys are in my thoughts. I hope the echocardiogram goes easily for Alex and all is found to be well. *hugs from afar*

[llnaughty.livejournal.com]

good thoughts to alex and your family.

[erbie.livejournal.com]

Good thoughts to you and Alex. Bob had an Echo done at about two and a half, and they didn't have to sedate her. She just watched a video. Though I guess with a one year old, it's a little different. Hopefully it will all turn out to be nothing. I know how hard it is to watch your baby go through all sorts of tests.

[therealjae.livejournal.com]

How scary. I'm glad to hear that it's likely to be something relatively minor, but the uncertainty must be really hard. Here's to it being either nothing at all or something easy to cope with all around.

-J

[iamjw.livejournal.com]

Well, I hope you won't have to, but it's good to know that this is something that can be dealt with, from the sounds of it, easily.

[jonquil.livejournal.com]

I'm sorry. I'm glad it's no more serious, but sorry there is still a pretext for worrying. May it be unwarranted.

[kate_nepveu]

An hour seems a bit long for my adult echos, but I suspect they're building in a margin of error there, as well as possibly trying to look at *everything* rather than just one little valve.

Hope it goes well for all of you.

[rivka.livejournal.com]

Maybe an hour is the whole appointment, not just the test itself? I know they don't include the time it takes for the sedation to take effect, because we were told to show up 40 minutes before our appointment time.

[mjlayman.livejournal.com]

My echos usually take about 45 minutes (once the tech starts), but I hear her complaining under her breath about all the mass of the breast in the way.

[ewein2412]

ugh. Serene thoughts winging your way!

[perceval.livejournal.com]

Plus, with that sort of advance warning, you can do a lot to promote cardiac health (only to watch it all go to pot when Alex becomes a teenager ...)

[ratphooey.livejournal.com]

We had to fast before an ultrasound a few months ago. Try and schedule one as early in the day as possible, so that you can get up and out before she has a chance to get upset about not being fed.

I was more worried about not being allowed to feed a hungry baby than about anything else, and it turned out fine - once we got to the hospital, there were so many things for him to do and see that it never occurred to him to be hungry.

Good luck!

[rivka.livejournal.com]

Thank you, that's very helpful. It looks as though the earliest available appointment might be 9:00, which is what we have. I was hoping for an 8:00, which - given that we're supposed to show up 40 minutes early for the sedative - might've allowed us to roll her right out of bed and into the car.

My mother suggested making sure that there's a steady program of activities between waking up and leaving for the hospital. We might, I guess, try taking her out for a long walk.

My fear is that we'll get stuck in an exam room and have a long wait. That's what happened yesterday, and it was almost impossible to keep her happy even on a full stomach.

[ratphooey.livejournal.com]

We did a lot of walking up and down the hallways while waiting to be seen.

Oh - the transition from sedative to actually sedated was wild. He was so physically restless, we nicknamed him Mr. Flippy. It was as if he was somehow trying to outrun the meds. It was quite an effort to restrain him so he wouldn't hurt himself. And then, all of a sudden, he went out like a light.

[pameladean]

I'm sure you can cope, but I do hope you don't have to.

P.

[wcg.livejournal.com]

This is at least mostly good news. But I know you're still worried.

[ailbhe]

Oh ick. "Don't worry" is such a useless thing to say... it sounds pretty good but I can't imagine taking it particularly calmly myself.

We fairly frequently have to keep Linnea happy in hospital waiting situations, for my appointments not hers, and the best thing we've found so far for a *short* wait, ie less than two hours, is overpriced toddler magazines with free toy gimmick things on the front. They last a long time once you get them home, too; we only recently disposed of the one I bought on the way to Ireland when she was 15 months old, and we didn't even tear it up for collages until about two months ago.

[rivka.livejournal.com]

Toddler magazines? I don't think we have any of those here... but I'll have to check a big bookstore and see. It does sound like something Alex would really like.

[ailbhe]

The BBC produce a range of them, presumably to make up for the lack of advertising revenue... They tend to have a story, a puzzle or two, and lots and lots of pictures. The most recent one we got had a butterfly toy and two pages of stickers.

[the-siobhan.livejournal.com]

FYI, it turns out my daughter had a heart murmer at birth. It was gone by the time she was two.