AND.....we're FREE!

On Thursday we packed up Luke and headed to Riley. We had a pulmonary appointment. I went into the appointment thinking that we would stay on oxygen just a little longer at night, because of that wonderful sleep study...if you can't remember here is a look back. Sleep Study = Emotional Mommy Well apparently it wasn't as bad as I thought. We never received any results, so I never really knew what to think about it all. Luke slept 421 minutes of 490 minutes of testing....don't remember that! He also spent 29% of that time in REM (deep sleep) sleep. That is really good according to Nancy. They wouldn't have accepted the test if it would have been lower than 20%. He did drop his oxygen saturation to 81% once, however he was only that low for .04 seconds then brought it right back up. That also took place during the REM sleep. Nancy explained that is where everyone's oxygen saturation will drop, because we are in such a deep sleep. His average oxygen saturation during the whole test was 97%. WOW! I never would have guessed that. He also kept his CO2 right in range most of the time. I guess I could have slept a little easier that night, as long as he did the same. So with those results there was not other option, but to rid ourselves of oxygen completely. No more when we are in the car on long drives. No more at night. I no longer have a giant 50 foot tube running from my kitchen to our bedroom. I no longer have to put patches on Luke's sensitive face. Our bedtime routine has been cut in half. I don't have to worry about the tube getting wrapped around him. I don't have to worry about the tube coming off and him sucking on it at night. However, I know have new worries. I now lay in bed and listen to him breathe when I go to sleep. I want to hear it. I also have to watch to make sure he doesn't put his blankie over his face. Before, I didn't worry as much with it since it is crocheted and he had oxygen just in case. No however I am always checking on him. Instantly Jonathin was ready to move him into his own room now. I am not that ready. For one thing it is all the way across the house. He has a video monitor, but it still worries me. Not to mention he still wakes up in the night when he loses his pacifier and it is easier with him in our room. I know the day is getting closer though. Yesterday I packed up all home medical things and am just waiting for them to be picked up. It took us a month to get our own pulse oximeter and I used it for less than a week and it already goes back this week. I now feel like we can live like a "normal" family now.

Our biggest thing now is gaining weight. Luke has been giving us problems lately on taking bottles. He is supposed to take 20-24 ounces daily. We are lucky to get 15 in him. He just won't take a full bottle. He only eats every 5 hours or so. He has a problem playing with the bottles. We have tried other bottles and we find one that he likes. Then he changes his mind. I have asked if it the formula that he is on. Everyone tells me he needs it because of his prematurity. However, if it is giving him problems, I would rather him eat then not eat. Pulmonary has us watching it closely and are going to talk to a dietitian to see what to do. It worries me that they will make us go back to an NG tube for a bit. I just want him to pull things together and gain some weight. Pulmonary thought maybe he is having some reflux so they put him on prilosec. So far it hasn't helped with him taking more formula. I just don't get it. Hopefully we can figure things out soon. I am at the point where I will try new formula just to get him to eat.

Also, just a quick note. Could I get a few prayers to our friends the Morgans. They are a family we met and I have became really close with while in the NICU. Their daughter, Lily, was diagnosed with viral pneumonia yesterday and have taken her to Riley last night. She will probably be there a few days. Thanks!

Jordan