Day 11-and all Problems

Happy Superbowl Sunday!!-Too bad the Cards lost!! Tyler cried and Jake cried too!!

This morning they started out early! They started lowering his Oxygen levels and stopped at 30% in anticipation of removing his breathing tube. At 6am they stopped feeding him in preparation for extubating him. They also stopped his Fentanyl (pain med). I thought he was a good baby and didn't mind the tube, but boy was I wrong!! Once that Fentanyl wore off he started squirming, and tried to gag the tube out of his mouth. Then, you could see him cry, but no sound would come out, just the look on his face. It was really hard to watch!Here are all the machines and baby Jake. There are a few less machines on the right side, but they are slowly getting removed!!

They took x-rays and lots of blood gases to check all of his levels and they felt he was ready for it. Finally, at about 1:15pm he was extubated and the put oxygen with the little prongs in his nose. He seemed to still be having some problems so they put him on a machine called High Flow that forces moisturized air into him and sort of puffs air into him to help open his lungs up. Tyler and I and the kids went to the Gardners home for a Superbowl party, and Grandma Dennison came up to babysit! He loves his babysitters! I got back to the hospital with about 10 minutes left in the game. My parents also came up to visit and watched the sad ending to the game. Here he is right after being extubated. He almost seems to be smiling! I would too, if I could finally cry, make noise, and suck on a pacifier!! So cute!!

I think this is one of my favorite photos so far! Check out that belly button!! I'm interested to see what it will look like after it falls out!

Well, let me tell you what else is wrong with Jake. So far, we know he only has one kidney and it is really low in his Right abdomen, but it seems to be working well. He has one undecended testicle. He has a tethered cord in his lower lumbar, which they aren't concerned about right now since he is able to move his feet and legs, but we will have an MRI in 3 months to see the best course of action. He also has 4 extra vertebrae in his lumbar area, causing severe scoliosis. They will also look at that when he goes in 3 months. The tethered cord will most likely require surgery, but they aren't sure when because of his heart condition, they don't want him undergoing surgeries his heart can't handle. The extra vertebrae might be fine the way they are, or he might have to have rods, but we don't know. He only has about 9 ribs, when you are supposed to have 12, so his torso is a little short. They don't know the long term effects of this, or if it will cause any problems with growth to the lungs. He also has only 4 cervical bones (the bones in your neck that give you a long neck) when you are supposed to have 7. Again, they don't know if this will be a problem, or if he will be fine. Unfortunately, there are a lot of "we don't knows" and "we aren't sure." It is kind of frustrating, but at this point, we are going to take things a day at a time and just be grateful for each day!! We can't worry about what may or may not happen in the future or we will go crazy!! We are just blessed and glad to have this little miracle in our family!!