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marissar
04-12-2005, 11:50 PM
While in the hospital they found an irregular heart beat on baby. I pushed and pushed for an echo but they only done an ekg which showed nothing. We went back to the family doc today and he is going to send her to my cardio and get an echo done, as it turns out her heart has an extra beat. It could be nothing but the best way to make sure is to do an echo. She has a midline malformation and anyhting along that line could be formed wrong, including the heart. She is also going to see genetics and have a full work up to check anythign that could be affected. So far all we know is that her brain and intestines were affected. OMG somebody finally listened and is going to really check her out. We don't need anymore surprises.

The neuro specialist contacted me after reviewing her scans and told me nothing could be done but therapy and meds and as long as she has seizure control there is no reason she would have a lessened life expectancy. He also told us she has really major brain damage and for her extent it was amazing what kind of progress she is making and it looks like she may only have a delay. :D Boy we needed some good news.

Karen T
04-13-2005, 07:13 AM
I cannot imagine handling all this information. It sounds like you are doing an amazing job parenting. Keep up the good work and yes you did need some good news. Keep us posted!
Karen

margaretinva
04-13-2005, 07:30 AM
Holy cow - you all are real troupers! I'm praying for you!

Lisa V
04-13-2005, 06:16 PM
I am so sorry to hear everything that the baby is going through. You are really on your toes with all the questions and finding exactly what is wrong with baby Rose. Please let me know what the results of the echo are ehwn you find out. She is in my prayers as well as you.