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Old 07-28-2010, 10:06 PM   #1
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My son could use your thoughts! *UPDATE*

My son is having an echo done of his heart tomorrow to reevaluate the size and placement of two holes they found during other testing. I'm *really* hoping the holes closed on their own (which I was told was fairly common in babies) or at very least stayed the same size. He has had some breathing problems lately though so I'm a little worried about it and could use any extra thoughts anyone wished to send our way. Thanks.

UPDATE - More good thoughts please?:

Well, I managed to find someone who could look at the results and fax a copy to my ped. Good news: There is no mention of the holes, which means they more than likely closed up. Bad news: They found two other heart defects that had gone previously undetected. Both relate to his aorta and both more than likely need to be surgically repaired. We are going to have a discussion with the cardiologist next week when she returns from vacation to discuss our options... They also found a defect with his larynx that is more minor and combined with his GERD is what is causing his breathing trouble.

He is such a happy boy that you'd never know anything was wrong, I actually started to think I was crazy for having this nagging feeling about him. I'm glad to have my feeling validated but it's really draining. I really appreciate all of your thoughts!

UPDATE #2:
He does not need surgery at this point, huge relief! Since he is healthy otherwise and they only found these two defects because they were looking for something else, they are just going to regularly monitor the condition of his aorta and go from there. He will need treatment at some point, and may be put on restrictions when he's older, but we'll cross those bridges when we come to them. THANK YOU!

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Old 07-28-2010, 11:51 PM   #2
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Re: I don't normally post here, but...

My thoughts and prayers are with you and your little one.
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Old 07-28-2010, 11:55 PM   #3
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Sending prayers. dd had a small hole in her heart and it closed up around her 2nd birthday. Keep us posted mama.
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Old 07-31-2010, 10:28 PM   #4
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Re: I don't normally post here, but my son could use your thoughts!

*Slight* Update
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Old 07-31-2010, 10:31 PM   #5
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Re: I don't normally post here, but my son could use your thoughts!

Hang in there. I hope everything turns out to be fine!
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Old 07-31-2010, 11:33 PM   #6
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Re: I don't normally post here, but my son could use your thoughts!

I will certainly keep your little precious boy in my prayers.
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Old 08-01-2010, 11:51 AM   #7
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Re: I don't normally post here, but my son could use your thoughts!

I can relate to you. Dose your son have VSD? My son was diagnosed with it at birth. He also was having troubles breathing. There were 2 tiny hole in his heart that didn't close up when they were suppose to. He has been getting monitored since birth (march 2007). He went from getting monitored at birth to 6 months to 1 year to age 3 (just got re checked on Thursday) to now again in another 5 years . The doc said it is very common in babies now days. The holes in his heart we just found out are very minimal and wont affect him at all in life he can run play jump do sports. So he said there just a tad bit smaller than they were at birth.
Just wanted to give you my side of this experience, a good one in a case like this.
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Old 08-01-2010, 07:20 PM   #8
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Re: I don't normally post here, but my son could use your thoughts!

As a mom of a heart baby who had his first surgery at 6 weeks. I'm praying your little one ends up being just fine!
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Old 08-01-2010, 08:13 PM   #9
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Quote:
Originally Posted by mom2~3offspring View Post
I can relate to you. Dose your son have VSD? My son was diagnosed with it at birth. He also was having troubles breathing. There were 2 tiny hole in his heart that didn't close up when they were suppose to. He has been getting monitored since birth (march 2007). He went from getting monitored at birth to 6 months to 1 year to age 3 (just got re checked on Thursday) to now again in another 5 years . The doc said it is very common in babies now days. The holes in his heart we just found out are very minimal and wont affect him at all in life he can run play jump do sports. So he said there just a tad bit smaller than they were at birth.
Just wanted to give you my side of this experience, a good one in a case like this.
Thank you mama They told me originally that he had an ASD and a VSD, but they were both relatively small - enough that they could just monitor them for the time being. But given his multitude of health problems (he had aortic surgery at 3mos old) and now some reoccuring breathing issues, I'm hoping there is nothing else going on. It's good to hear positive stories though!

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Originally Posted by Chrijodo View Post
As a mom of a heart baby who had his first surgery at 6 weeks. I'm praying your little one ends up being just fine!

Thank you, and everyone else. My son has had surgery once already, it's tough not worrying about the what-ifs. How is your son doing now?
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Old 08-01-2010, 09:16 PM   #10
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Re: I don't normally post here, but my son could use your thoughts!

He is a little guy but he never let's anything slow him down He may have a heart defect but he never got the memo apparently
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