Day 12: Frankie's First Full Moon

My Dad and sister came up tonight and visited with the Frankster and ate dinner with us. Frankie got another bath tonight. This has been a hard night for me. It started when I had to wake Frankie up for a bath. I really got scared because he was so sound asleep, it took a while to get him responsive. After the bath and for the rest of the night, the leads for all his monitors just didn't want to stick. This caused abnormal readings and for the machine to continuously go off. He did wake up around 11:00 and gave me a pretty hard cry. I think he may be having problems with gas getting stuck in his intestines. I know my intestines are very sensitive to pressure because of my ibs. Since methane is lighter than air (think of cow farts depleting the ozone) it would get stuck in the highest part of the of the body. That is my theory and my theory only. Remember, I repair and sell cars for a living, I do not repair and sell children for a living. But like I said earlier, this has been a hard night for me. I never understood a fathers love for his son until now. Sure I love my wife and would do anything for her and she knows that, but multiply that by a gazillion, and you will begin to realize what this is like. I feel so helpless, I wish there was some aftermarket part made by a little China man I could bolt on to fix this. I knew this would be a struggle but holy moly. At least this is my first real hard day and Alex is feeling strong. I actually saw her taking shots of breast milk and bench pressing some of the older kids in the hospital earlier. I just hope she doesn't start wearing tapout shirts. I know my son is strong, and so are we, and this will be over soon. In no time I will be looking back at this whole experience like it was decades earlier. There is light at the end of the tunnel. I have a whole new respect for someone who has a permanent disability and the people that help them. Physical exhaustion is lame, its the emotional exhaustion that's taxing. But we have it good. When you realize a lot of omphalocele babies rock out in an incubator, others have anomalies, and then look around the NICU and see babies much worse than Frankie, you start to feel lucky. And I know I am lucky. I am the luckiest SOB alive the have Frankie and Alex.