Cystic fibrosis is the most common, potentially lethal genetic disease, occurring in one in 3,000 births. The disease is a multi system condition that leads to progressive lung failure, pancreatic failure and gastrointestinal obstruction, or blockage. My perfect little angel only 2 weeks old now has to deal with this. We are left with little answers to the questions we have. Our specialist believes Jack's symptoms could be on the milder side but there are no answers to what "mild" could be. We hope that he shows minimal symptoms in the future. He will visit the specialist every 2 weeks and be monitored closely for any symptoms. The one hopeful thing for me to focus on is he is gaining weight. There is just a lot of hope going on around here while dealing with the hand that we've been given. We hoped and dreamed for him. It was so difficult trying to conceive Jack. He makes me so happy. He is the most perfect angel. I love him so very much.
I can't express the scary sadness that has taken over our home. We went from pure elation to the lowest of low. I've cried all day every day. I'm trying to be a new mom, take care of myself and grasp what this diagnosis means for our son. All I know is I'm barely holding everything together. I'm so stressed I can barely nurse him. I'm probably so dehydrated from crying all the time. I've been forcing myself to eat because the thought of eating makes me sick. I'm really trying to be everything for him but I feel like I'm failing at everything. All I want is for my baby to grow up big, strong and healthy. I just wish I was coping better than I am.
Does anyone have experience with Cystic Fibrosis?
Any words of wisdom or encouragement would be greatly appreciated.