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- Fri Feb 10, 2006 1:38 pm
I have a baby girl born 11-30-05 at 35 weeks.Was in NICU for 2 weeks with breathing difficulty,sepsis, and was diagnosed with VSD.I was told this is a small hole in her heart that was the size of the end of a pen head and not to worry.Is this true?I was told to bring her back to get checked at 6 months so no one is monitoring her heart until then.She gets very tired easily,wheezes and has trouble feeding since she is not able to get full breathes.Her breathing moves her entire abdomen she breathes so hard.She is on heeart and lung machine and stil having bradys but not as many and she no longer chokes when feeding.Can the getting tired,wheezing and breathing difficulties,sweating easily,runs a fever every week for 2 days and DR. can't find why,sleeping more and more all be related to VSD? Some people say no VSD would not cause these symptoms but what else is there?She is gaining weight fine she weighs 12 pounds now at 2.5 months old.Can VSD get worse and if so what are the symptoms?
Also I am worried at how high risk she is for RSV? I am terrified of her getting it since I know how bad it can be.The NICU gave her the Synagis shot but local Dr. refused said if she got it she would be like "normal" baies getting it .Does her heart not make her higher risk plus the breathing problems she still has? I HAVE already spoken to my Dr. several times and he just seems to think nothing bad is happening her hear defect he never brings up and when I do I am told to not worry and that is it and then the Synagis shot he just said she did not need it.Any input,informaion, or advice I greatly would appreciate.
- Fri May 19, 2006 12:06 pm
You have a lot of legitimate concerns. Almost all babies are born with VSD, but it closes in some almost immediately -some as soon as the very first breath! Because yor daughter was born early- her's may take a while to close. It also seems the physicians are contradicting one another- and this can be very frustrating. Synagsis In my opinion- and I am sure most would agree could only benefit your daughter- not only because of her cardiac condition but more so because of her respiratory condition- especially by the way you describe her respiratory status- which many other premature babies have- keep in mind they weren't meant to be born just yet so it puts a lot of stress on her. Her pediatric cardiologist will know when the VSD becomes a problem- if your baby can wait given the circumstances, and her condition heart surgery should be put of as long as possible - and again lets hope the VSD closes up on it's own- this would be best for her.
The average healthy newborn sleeps for 18 hours- she may sleep more because of her prematurity- and other factors as well. When it comes to high risk babies we were taught (at a level one trauma center- with a level 3 NICU -highest care avail) to handle these babies with "professional neglect"- sounds harsh but it's not- the less you stimulate these babies the better for them in more ways than one.
I hope this was of help to you- how is she doing now? If your time permits please give me an update on her condition.