Follow Up Appointments

We are continuously surprised by how well Magnolia is doing.  Because we had the WHS diagnosis during pregnancy we had time to read and research everything we could find on WHS.  We told people that we were preparing for the worst and hoping for the best for Magnolia.  The doctors told us the same.  When we left the hospital after only 18 days we were thrilled but shocked.  Of course we knew we had 7 follow up appointments and a long road ahead, but we were taking it day by day and grateful for how well she was doing.  Now we are starting to have her follow up appointments. 

We had our pediatric cardiology appointment last week.  I had just read a great post from another mom about how many doctors are not aware of the broken hearts of parents and oh how appropriate of a post it was.  The cardiologist that we saw was so straight forward and matter of fact that he literally took my breath away.  We went to see him because Magnolia still had an open PDA.  Nothing of great concern. Or so we thought.  As he was doing the echo I noticed his facial expressions and got concerned.  When I asked if the PDA was closed he said no and we have other issues going on as well.  My heart started racing.  He told me to go back to the exam room, get her dressed and wait while he looked up some numbers.  He came in to inform me that Magnolia's PDA is still open and she also has an ASD and pulmonary stenosis.  He then said, "You know all about WHS.  It's a horrible syndrome and has a lot of really bad stuff associated with it.  This is to be expected.  I'm sure that's why you are here.  We all have a limited number of days so you should cherish each one you have with her."

It doesn't matter how true all of the things he said are.  It doesn't matter if I did know there was a huge chance that Magnolia would have heart issues.  It doesn't matter if we all do have a limited number of days regardless of a syndrome or not.  Did he need to say it like he was telling me he was going golfing that afternoon?? I'm aware that as a pediatric cardiologist he sees some very scary and extremely life threatening things on a daily basis.  I'm also aware "in his world" this is not that surprising.  I'm also aware that he did ask if I knew she had WHS before birth and if I knew about the syndrome to which I responded yes.  I did NOT know that by my responding yes that somehow gave him the go ahead to flippantly inform me of my daughter's heart issues and tell me I could lose her any day.  Please do not get me wrong I'm fully aware that Magnolia could be doing so much worse, she could still be in the hospital or getting ready for surgery or something even more dire.  We are so grateful and thankful that she is doing so well.  I guess I was just spoiled by the NICU doctors, nurses and staff.  They treated OUR hearts with warm soft hands.  They didn't casually tell us of any of her health problems.  Every time they spoke to us it was with care and compassion.  Apparently those days are over. I really should have printed out the post about broken hearts and given it to the cardiologist, though I doubt it would have changed his demeanor.  It was a rude awakening to the world of which we are entering.  Again, I knew we would have to get thick skin, fight and be an advocate for our daughter, but I was hoping it wouldn't start so soon.  We have a kidney follow up appointment this week, hopefully this one goes better. 

I was hoping that I might soon get comfortable enough to quit checking every ten seconds to make sure Magnolia is still breathing but this appointment just ruined that.