Introduction

Hello,

My name is Mike. I am the parent of 2 children with Cystic Fibrosis. My first CF child, Will, was born in 2002. Will's birth was a difficult process. My wife and I found out that CF was a possibility early in the pregnancy and were hoping for the best.

When Will was born, he had a blockage in his intestines that required immediate surgery. He was in the NICU (Neonatal Intensive Care Unit) for 2 weeks. He came home with 2 stomas, the ends of each half of his small intestine coming to the surface of his abdomen. 4 weeks later, he went back to the PICU (Pediatric Intensive Care Unit) and had surgery to put his intestines back together.

Caring for his stomas was a unnerving task. The lower portion had to be irrigated. This process was to push fluid through the intestine to flush his system. I had a hard time with this because I never was comfortable knowing how hard I could push the syringe to irrigate the intestine without damaging it in the process. Looking back, I probably wasn't pushing nearly as hard as I should have been.

Will came through both surgeries fine and now (At four years old) is dealing well with CF. He is a beautiful little boy with an infectious smile.

While he has been hospitalized twice for blockage related problems, he is as healthy as we could hope.

3 Days ago, my daughter, Sarah, was born with very similar results.

I have never been a person to keep a diary or document anything for that matter, but I thought it might be a good idea to keep this blog. Memories of what Will went through come back, but I have no reference point other than my suspect recollections.

It is also much easier as the Hospital has WiFi access in the NICU which gives me something to do while Sarah sleeps the day away.

(She just opened her eyes. This is the first time since surgery that that has happened)

I hope that this Blog will, in the future, give me a place to reflect on all the events that surrounded Sarah's earliest days and maybe give other parents in the world a place to go to understand that you are not alone.