10/23/2011

Just talked to the surgeon. They want to run some test before they do surgery. Another ECO of his heart, blood work, re-test for cystic fibrosis since he was positive at birth and a few studies on his lungs and airway. They said they'll try to do it microscopically but if theres too much scartissue theyll have to open him up. They might have to re-intubate him and she said it could be hard to excabate him so he might stay on it for awhile. Itll be hard to see but they have to do what they have to do. They just want all the ducks in a row and have no suprises like hyper tention or anything else. :( They said they might have to put off the surgery for 2 weeks if he is still sick. The first time I got to see my son he was intubated. It was the image that poped into my head when the surgeon mentioned it as a possibility. I felt like we were taking atleast 3 steps back just with his respitory problems. If it came down to intubating Liam and having him crash suddenly during surgery its an obvious choice. Situations like this just don't help my PTSD. I know I need to be strong for Liam and for Lanie and for Justin so I have to keep it together. I know eventually we will get to the point that this will all just seem like it was a nightmare. It feels like a dream that we even had him home, like it didn't even happen. We were blessed that we got to take him home though. We are blessed to have every day we have with him. Liam is a fighter and he will fight to the very end. The statistics for people with cystic fibrosis suck. They're life expactantcy is 30-40 years and 95% of males with cystic fibrosis are infertile. Then again there's no telling how long a CDH baby will live. Theres no reason to think they can't live a long happy life but there are too many unknowns. Again Liam is a fighter and it doesn't matter what he has. He won't give up and neither will we. We will love him his entire life and hopefully, if God willing he will outlive us. I am happy we have answers. I am happy we have a "solution". With the world of technology these days theres no reason to think the worst. I know that we're going to celebrate everyday and every smile. We're going to make sure he lives as normal as a life he can and that he is happy and painless. I know I will continue to tell his story in hopes that it helps someone else and get out awareness. Being a mother of a baby with Congenital Diaphragmatic Hernia has changed everything for me. It's not an easy road. It's a long, hard, dark road we have ahead of us but Liam's smile gives me the light I need to see the end.