Friday, September 30, 2011

Oh my...that's why

Two years ago today...this was my daughter right after her Norwood.  We could see her little heart beating under the Gortex bandage. I so wish no parent ever had to see their baby look like this.
My little girl today.  I am so happy we didn't listen to the 'experts' two years ago!
I have been overly emotional this week.  It happens sometimes and usually I can figure out why.  This luck.  Every little thing has triggered an unusually easy crying spell for me.  Now...I do cry easily a lot of the time, but this week really has been different...and more often.  Of course, I finally figured it out.  The past few weeks were the worst of my entire life.  Two years ago today Hope had her Norwood...that was actually one of the best days because someone (our hero...Dr. Mavroudis) took the chance on Hope and did her surgery.  A week before we were told that Hope was not a candidate for the Norwood and we should take her home to die.  Even as I am writing this I can feel everything from that day...the pain, anguish, hurt, and just plain disbelief.  It was a shock and totally unexpected.  She was scheduled for surgery and then they canceled it.  We didn't know what to so many parents.  We trusted our doctors.  We trusted everyone.  We thought they knew best.  We are MUCH smarter now.  We trust...just not blindly.  We have no problem getting second, third, one hundred opinions.  We know that our daughter's life is worth everything.  She is a fighter and so are we.  I will continue to try and find anyone that is given the same advice...take your baby home to die...and have them get other opinions.  I don't think that is something ANY doctor or hospital should ever tell any parent.  There should be rules against this...they should inform parents about options, other hospitals, other doctors...rather than telling them there is no hope.  Not once were we told to get to another hospital...that another surgeon might be willing to help.  Ughhh...I hate writing about makes me really mad nowadays.  It used to make me sad, but I know of two other babies that were at the same hospital that the parents were told the exact same information.  Both families transferred their babies to other hospitals.  One baby did not make it, but got to spend his last days at home with his family and the parents feel like at least they know for sure that their baby would not make it...because they got another opinion.  They won't have to think about the 'what-ifs' that I still think about way too often.  The other family has a beautiful son and he is now at home...AMAZING!  Sadly, I think about all the other families that I don't know that may get the same news.  I'm sure the doctors there would never give them my phone number.  I find them accidentally.  And sadly, I know I can't find all of them.  I worry that some parent will have the 'what-if' thoughts after they have taken their baby home to die. 

Sorry for the depressing post.  I told you ahead of time that I was overly emotional.  Two years ago today, my daughter was saved by the most brilliant surgeon ever...Dr. Mavroudis is and always will be our HERO!  He may not be from some big, fancy, number 1 rated hospital...but he is the BEST!!!


  1. This comment has been removed by the author.

  2. Happy heart day, Hope! What a miracle!

  3. I know I'm a little late, but Happy Heartaversiary, Hope (and mom)!

  4. She's very blessed. I wish the best for her.

  5. Happy Heart Day Darling Xxx

    I don't think its a depressing post at all, I think us heart parents need to mark these special occasions and miles stones and at the end of the day they are a huge part of our lives. I always do blog posts on my Little Man's heart days too, they are such special emotional days.

    Sending love and hugs to you all Xxx