Appointments

Julia went for her 2 month well-baby check up on Dec. 13th.  I was still worried about reflux and her screaming, but I did mention to her doctor that her eye looked "funny."  She looked at it with a light and agreed that something was wrong.  Suddenly the appointment was all about "the eye."  No more was said about reflux!  She explained that she would be calling a pediatric opthmalogist in the morning to try and get Julia in quickly.  She mentioned cataract and other problems, but I honestly was in such a daze that I don't remember.  The doctor even mentioned that she never sees anything like this and asked if the new nurse practictioner could come and take a look.  I knew then that whatever was wrong with Julia was serious and I started to get scared.  She had her 2 month vaccinations and I took her home.  On the ride home, I remember calling my parents and crying that something was wrong with her eye.  I knew it had to be something serious because they don't send you to a specialist the very next day for routine problems.  My mom and dad were reassuring, but I was nervous.

The next day I got a call at work from St. Louis Children's Hospital Eye Clinic asking me if I could have Julia there at 10:30.  I didn't want to go alone, so my dad went with me.  I am so thankful he was there so that I had another set of listening ears.

Julia was examined by a fellow and he immediately told us that she had a cataract in her right eye.  He explained that your lens in your eye is shaped like an M&M and the inside of hers was cloudy.  They would have to remove the front of the lens and "suck out" the cloudiness.  She also appeared to have a "stalk" in her eye that they would try to remove as well.  Her eye was also smaller than the left eye.  I asked if surgery was the only option and he said that we could not do surgery, but that she would never see out of that eye.  At the moment, she was completely blind in that eye.

They did several tests that day - lots of lights shining in her eye, drops and even an ultrasound.  They determined that the blood vessels that form in utero to develop the eye had not dissipated.  Instead a "stalk" was left and it had caused the cataract.  She had PHPV (or PFV).  They wanted to schedule surgery right away as she already had not had any brain connections with that eye for 2 months.  The doc explained that they wouldn't know the extent of the involvement of PHPV until they were in surgery because right now they couldn't see to her retina because the cataract blocked the way.  After surgery she would have to wear a contact lens (CONTACT - did you say contact in an infant?) and patch to force the brain to connect with that eye.

I know there were a lot of questions I should have asked during that appointment but I was stunned and shocked and scared.  We scheduled surgery for the following Thursday - Dec. 22.  Right before Christmas.