The next morning my parents came to get me and drive me to the Children’s where Chris and Felix were. Once there, I was brought back and finally got to see my little boy. Once I was settled the surgeon came in and explained what they thought was going on, they asked if there was a history of cystic fibrosis on either of our sides. My heart sank. My cousin Jared died a couple years ago and he had it, I had grown up watching him in and out of the hospital until finally he succumbed to the illness. My other cousin (his brother) also has a son with it so I’m no stranger to the long term care required to maintain a healthy body. I refused to believe that somehow I carried the gene and not only that, found someone who also did. No one on Chris’ side had it so it was a shock to him that it was even a possibility.
Felix had surgery and over the next three weeks recovered remarkably well! In actuality he likely could’ve gone home a week before he did, but they were extra cautious in case his digestive system didn’t tolerate milk. Over the three weeks Chris and I went back and forth while the girls were passed from person to person. I really felt like I was failing all around. I felt guilty for not being with them, but guilty when I wasn’t with Felix. It was an awful position to be in and one I never wish on anyone.
Two weeks after his birth we finally got the results; he indeed had CF. For those who don’t know, CF effects both the respiratory and digestive tracts and is a genetic inherited disease. His pancreas doesn’t create the enzymes needed to digestive food and his body creates a thick, sticky mucus often resulting in difficulty breathing and digesting. That sticky mucus was the reason he had a blockage in his intestine, the meconium couldn't pass so it blocked everything up. Poor boy. So far his lungs are fine but over time they may be affected. It is a gene that requires both parents to be carriers and there is a 1in 4 chance with every pregnancy that the baby will have it, 1 in 2 chance they will be carriers, and 1 in 4 that they will be neither a carrier or have it. Of course with our luck, our first baby had it. Currently there is no cure.
We were told that he had to have digestive enzymes with every meal and have regular appointments at the Children’s Hospital to monitor his health. We just started his physio to get him used to having it done daily, so that when he does need the mucus to be broken up, it’s not a shock for him to have me pat him for an hour a day. It was a lot to take in and many tears were shed. But, I felt peace after the result. Felix is doing so well and you wouldn’t even know that he was so sick at birth. He showed the nurses and doctors how strong and resilient he is. Moving forward we have hope that one day there will be a cure. The states has a drug that comes pretty close and hopefully one day Canada can have that drug available too. We are also lucky that I have a good support in the family so Felix will have a buddy to talk him through the physio and breathing treatments he will have. I also have people I can turn to who understand the parenting challenges that come with it. Deep down I always knew I was a carrier. But as Melissa says “Felix wouldn’t be Felix without it”.
So far nothing has gone according to the plan. But I’m done guessing the future. What ever happens is out if my control, I can just do the things to make Felix’s life easier. I wish every parent had a Felix in their life. He’s such a sweet baby and more than I deserve and I know that he'll be just fine. I just hope that as he grows, he knows he is more than a kid with CF, he is so much more. He has a way of making everyone fall in love with him and before he was born I knew that this child was special. I had been waiting to meet the sweet, calm, and kind son that I saw in my dreams and here he is. I am constantly in awe of how wonderful he is.
We know this journey will be long but we ask that you see him simply as Felix. I can't wait to see what the future holds for him.
No comments:
Post a Comment