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.