Rock Bottom

Friday, November 30, 2012, was the hardest day for Hunter and I. We had to hand over our little superman to the surgeons to conduct Christian’s unexpected first heart surgery.  Because the pumping function of Christian’s heart was not improving with medicine, Dr. Pizzaro decided that it would be best if he did half of what they call the hybrid procedure and possibly do the other half later if there was still no improvement and eventually have to get the Norwood.  The procedure they did Friday was went in and put bands around the pulmonary arteries to help his heart not have to work so hard.  I was able to hold my baby and Hunter and I loved on him and cried over him.  When it was time to give him to the doctors we walked along side until we got to the O.R.  That has been by far the hardest moment in our life.  I came back to the room and just lay on my bed and cried for my sick baby.  I wish there was a way I could take his place, a way to give him my healthy heart.  Not being able to do something for your child to alleviate their pain is the worst feeling in the world.  As a mother you want to comfort your baby, and I can’t.  The procedure went well and we were able to see him right after surgery.  No one can begin to prepare you to see your 2 day old baby with tubes and wires coming out from everywhere.  It was the most painful feeling.  We both cried over our little boy.  The questions of Why?! Still flood our heads.  He remained steady Friday through Saturday morning. 

 

Saturday afternoon when we went into see him in the CICU he had a mask on with a “sun lamp” over him.  We were informed he had Jaundice.  Seemed like if it wasn’t one thing it was another.  Hunter and I have begun to read him books nightly before we go to bed.  We want him to know our voices and know that even though we can’t be with him 24/7 that we love him deeply. 

Sunday came and the nurse on Saturday night told us that Christian’s heart rate had been irregular throughout the night and she wasn’t sure what they were going to do, but she didn’t act like it was much of a big deal.  The phone call came a few hours later that Dr. Pizzaro needed to speak with us.  My heart sank I knew it was more bad news.  He explained that Christian’s heart he cannot recall having another patient with not only HLHS, but also having all the other complications, pumping and irregular heart beat.  He told us that if we proceeded with the Norwood Christian’s chances of survival drop substantially.  If he had a “normal” HLHS heart the Norwood would be the best option, but at this point he told us a complete heart transplant is the option we will need to go with.  I cannot even begin to explain the devastation I feel.  We will be talking to the heart transplant coordinator today to get on the list.  The problem is we are competing with people all around the world for an infant heart.  They are in high demand and the supply is sparse.   Christian has O+ blood so any O blood type would work for him and O blood is higher in the population so that is working to our advantage.  It is not a matter of days when he will get a heart, but months.  My heart aches for my child.  There is no pain greater.

So at this point our option for Christian is a complete heart transplant.  Hunter and I are both devastated.  I keep trying to understand the reasons behind it.  I try not to get angry, but I do.  I cannot seem to understand how someone that has thrown away a child with an abortion, or taken drugs during pregnancy, or has complete disregard for their children are given healthy children.  We appreciate all the prayer and encouragement.  I personally am not responding to anyone because I just don’t want to talk.  Please don’t take this personally.  What we are going through is something no one that has not been in our situation can relate too and we are wore out of hearing Christian compared to something or someone completely irrelevant to what he has or having to explain over and over what is being done.  We are NOT accepting visitors besides our family.  We ask for continued prayer through this very difficult time.  I keep getting told how strong I am and honestly I am at a breaking point.  I am emotionally drained and I really don’t know how much stronger I can be.  No one should ever have to endure the kind of pain Hunter and I are feeling.