It is just so unfair

Today is October 22 and in a few weeks my Nicholas will be another additon to the "zipper club" and will sport a 3 1/2 inch scar down the middle of his chest. I can't help but feel totally helpless...I feel as educated about his defect as I can be, but completely unprepared for what lies ahead. In most things in my life, I try to be prepared, to have an idea of what I need to do for whatever it is I'm doing. But with this heart surgery, I can't seem to grasp what it is that I need to do to get ready for my sweet boy and what it is he will be going through. I am depressed. I am scared. I am anxious. I am moody. I am emotional. I wish I had a crystal ball...I just want to see what lies ahead for Nic and for our family.
I know he will be in good hands. There are just so many "what-ifs". I know he will have a theoretical better life. Without the surgery, he will most likely need a pacemaker by his twenties; he will most likely suffer heart failure by his thirties; he will be limited with exercise and sports...the list goes on and on. You look at my Nicholas, my loud, rambunctious, outgoing boy, and you don't think there could be anything wrong with him. It is just so unfair.

Congenital Heart Defects--Please watch

Introduction

So I am going to try out this blogging business...I feel like I need an outlet of all my emotions brewing inside of me.  I hope to be able to unload some of my stress through writing this blog and also keep friends and family informed of what is going on.  Hopefully I will meet some other parents of kids with CHD as they can surely sympathize and fully understand these feelings.

Nicholas is our third of four children.  He was born January 9, 2007.  He was my biggest baby--8lbs 14 oz!!!  As far as we knew, he was perfect.  We did not have any inclination that anything was less than perfect until he was 6 months old.  I took him to the doctor because I suspected he had an ear infection.  The pediatrition was concerned that she heard a heart murmur and referred us to a pediatric cardiologist.  I researched heart murmur prior to the appointment and convinced myself that nothing was wrong...95% of murmurs are "innocent" and either go away or are nothing of concern.  Boy was I surprised to find out that my Nicholas has a very complicated heart!  After hours at the doctor's office Nicholas was diagnosed with Congenitally Corrected Transposition of the Great Arteries (CCTGA) a.k.a Ventricular Inversion or l-tga; Mild Sub-Pulmonic Stenosis; a moderate Ventricular Septal Defect; a small Atrial Septal Defect; and mild Tricuspid Valve leakage.  What this means, is, that the bottom chambers, or ventricles, developed on the wrong side of his heart, and the arteries that carry the blood to his lungs and body are connected to the wrong ventricle.  So its a case of two wrongs made a right i.e. "congenitally (occuring before birth) corrected (the blood flows in a circuit) transposition (backwards). 

To make a long story short, Nicholas has not had any surgeries since his diagnosis.  However, with our wonderful Pediatric Cardiologist, Dr. Stanley Wright, we have met with the best doctors and surgeons at Lucile Packard Children's Hospital at Stanford University and Nicholas will soon be undergoing his first of at least two open heart surgeries. 

I will try to write frequently and let you know of any updates as they come!