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I am pretty scared and nervous for my son....he is 9 months old and today the drs told us that he has an enlarged heart. we go for an echocardiogram tomorrow morning. the dr asked us questions like does he sweat when he eats. (a little while bfing) does he have rapid breathing during feedings? (sometimes) I am afraid that they suspect cardiomyopathy.
does antone here know much about it...what sort of questions should I be asking the dr tomorrow?
I don't know much about HCM or cardiomyopathy in general, but I wanted to wish you luck! I know what you're feeling right now. Take time to breathe.
As for what to ask... if you are anything like me, you'll kind of be in a daze (if the echo news is bad), and it won't matter because you won't remember. I didn't remember until after our next conversation with our doctor (several days later) what my daughter's diagnosis even was. *shrug* My brain just kind of shut down and my heart hurt so badly for my baby... it didn't matter that the doctor had carried on for about 15 minutes with specifics about my baby's heart. I hung on to words: surgery, something was missing, amazing that she's alive, etc...
It may be better to write things down:
how is it treated?
how soon should it be treated?
things like that.
I hope your son is fine and you are worrying for nothing!!!
I also dont know anything, and I am sorry I cant help you with that. The biggest thing I can say is to talk about what is going on, even if its minor stuff it helps to get it out. And everyone here has been through something similar enough that we know the feelings you will be having. I agree that you shouldnt worry about questions yet, they will come later after you have some time to process what is going on.
Our cardiologist did an amazing job describing DD's condition, and answering questions we didn't even think to ask. He gave us a hand out of basic info, he drew pictures of a normal valve compared to DD's valve (since her's is atypical). He described two surgeries they do (one short term fix, one long term fix). Long term prognosis (from sports, physical limitations, progression, etc). It was really hard at first to deal with (I blamed myself a lot - being a young mom, not taking prenatals despite my best efforts too/throwing up non-stop, to just silly stuff). The best thing for me to remember is, there is no way to know why or how or what could hav been done differently - and really even if I was older, took vitamins, ate better, etc she would still have the defect.
A few questions that popped up after inital diagnosis was:
Are vaccines safe? There *ARE* medical issues and you can get a medical exception for certain heart conditions. Our cardologist reccomended a delayed schedule with only two diseases at a time at the most.
What physical limitations, now and long term?
What is the long term out look? (IE: can it go away, quick fix w/ surgery, or long term stuck with it for life).
Should we follow a "heart healthy" or other special diet outside of making wise food choices? (You know how cherrios or other cereals or foods have a a heart healthy logo or boost about lowering cholosteral *sp*)
I cant think of anything else off the bat. I know it was really difficult for me and if you ever need to talk feel free to PM me. The hardest part was and still is seeing my baby so healthy on the outside but knowing inside her heart could be not so healthy.
Also, my DD always sweets in her sleep, and did when she nursed as a baby. But I also know children WITHOUT heart defects and do the same thing. I think it is typical for some children to sweet while eating or sleeping. It is harder to seperate what iss normal though from abnormal when a heart defect is present - but for us it wasn't apart of her heart condition - it was just apart of DD being DD.
Proud Mommy To My Princess (5)
Watching over us -- August 2005, March 2010, October 2010, July 2011