1 yr Anniversary - Colin's Glenn

One year ago today was a very hard day, one year ago today we had to hand Colin over for the 2nd time trusting in God and his surgeons, one year ago today Colin had his Glenn surgery. It was a hard time between his Norwood and his Glenn with severe feeding issues, round the clock medicines, tracking his weight everyday, measuring his pulse oxidization, keeping records of everything, many, many doctor visits. I was very scared when they said he was ready for the Glenn because "he is showing some signs of heart failure", words a parent NEVER wants to hear. Especially not when your child is less than 6 months old.

We checked in the hospital the night before, it was a very hard night emotionally and Colin would not sleep in the crib, so Matt, Colin, and I slept on the little fold out bed. Katherine came up that night to give her brother good luck kisses. Matt's parents came that night and my parents in the morning. When it was time, they called us up to the pre-op waiting area. We watched cartoons with Colin until they were ready for us. Then the dreaded time came…. As long as I live, I will never forget the feeling of handing Colin over. I did not want to let go, I cried, someone please wake me up from this awful dream.

We waited in that waiting room, it was slightly easier than the first, but still a painful experience to have to go through. They called to let us know that he did great and we would see him soon. All that was put off because there was an emergency in ICU..please don't let it be my son, not that I wish harm on anyone else, but please don't let it be Colin. It wasn't but in a hard fact of life we watched a family loose their child, a girl of 13 waiting on a heart & lung transplant. That day a year ago, put so much in perspective for me, life is an amazing gift we are all given, and a lot of times we don't realize how truly amazing it really is.


One year ago today, this was Colin:

Skip ahead one year:

The last year has been amazing with Colin, first steps, first words, first birthday, first airplane ride, kisses, cuddles, milestones, eating back on track, decrease of medicines. Colin is just like every 1 1/2 year old, he just has a special heart. We are so proud of his strength and courage, he is a fighter. This is a very special day to celebrate for us.

I was saddened last week when a 20 year old man with HLHS went into heart failure and did not make it. We look up to these 1st generation HLHS kids to know what the future holds. But it is not the same plan for all. The future is not written, is not set in stone. We are lucky for every breath Colin breathes and every step he takes. He will fight HLHS his whole life, we will win, but know it's a long battle.

Today I brought in heart shaped cookies to my office (130 people). I sent an email letting everyone know where the cookies where, why today was a special day, and listed some facts on Congenital Heart Defects in hope to raise awareness. So many have sent such nice & caring responses, I am very lucky for all my support systems.

I know we will have to hand Colin over once again in the future for the Fontan, so everyday we give him lots of kisses in hugs, so he knows how much he is loved!