OLD GHOSTS POPPING UP

Way back when Priya was in the hospital, the doctors saw a spinal abnormality on her X-ray.  They called it a hemivertebra.  They didn't seem too concerned at the time and just said she'd have to follow up with an orthopedist when she was older.  It looked scary to me, and I did wonder at the time how that could NOT affect her looking the way it did, and I asked, but the doctors made it sound like no big deal.  Besides, we had bigger fish to fry at the time.  For some reason, I decided to look it up tonight, and I'm a little worried about what I am reading...okay, maybe A LOT worried!  It seems it is very, very likely to cause scoliosis, kyphosis or lordosis (depending on the kind of hemivertebra; I think Priya's is lateral from what I remember on X-ray, so scoliosis would be her problem I guess) and often requires surgery to prevent deformity and neurological difficulties and pain later.  Hemiverterbra is often found in conjunction with other congenital abnormalities and especially associated with "syndromes" (at least no surprise there to us, as we already know about all of those by now).  Evidently, the earlier it is found and corrected, the better. Only 25% do not progress and remain "dormant." 

ARE YOU KIDDING ME?????  ANOTHER potential  future surgery for my sweet baby girl???  Aren't the omphalocele repair, G-tube insertion, cleft palate and possible tongue reduction and umbilical hernia surgeries enough?  Now maybe a spinal fusion, vertebral extraction, and/or a brace or something like that?  I want to talk to an orthopedic doctor PRONTO...yesterday! What is everyone waiting for?  Why didn't someone explain this finding to us better?  WHY wasn't an orthopedic doctor one of the MANY doctors they scheduled us to follow-up with after discharge from the NICU???  What the heck?!!!!  I hope an actual orthopedist will tell me how completely wrong I am and that I am somehow reading the wrong journal info and that my sweet baby girl will likely experience little or NO symptoms or not need any more surgeries!  UGH...heartsick for my baby girl.  I hope so badly that I am worrying for nothing...

It is 2:00 a.m., and I have been combing through my discharge report and paperwork from hospital and NOTHING mentions the X-ray or its findings, which means my pediatrician was not given that info, so NO WONDER no one has been referring me to an orthopedist!  I am so frustrated I let this slip through the cracks.  

One day at a time?  BLEH... Right now I don't feel like taking it one day at a time.   I am so frustrated...