NG Day

I'm sitting here watching the clock as Chris sleeps. His breathing sounds better than it has in a week, but still has an occasional apneic period. NOTHING like we were a week ago.

Around 4:45, the nurse will be in to pull out our pH probe and then we get to take a quick bath wire free. Shortly after, the NG will be placed for feedings. He has lost 2 pounds since we've been here

I'm very emotional and I feel like a moron...I'm looking at what some of these parents here are dealing with and I am crying over a tube to keep my child hydrated. But at the same time, it's not necessarily the tube I'm upset about, but it's confirmation that there is something wrong with my baby. And no mother wants there to be something wrong with their children. Before you could look at his cuteness and forget about his struggles.

At the same time...we have a team that is INTENT on finding answers. All the doctors we have encountered have been fabulous, minus the resident that I schooled on CP this a.m. and I don't know much about CP. :) But in my experience, you do not use the word "ALL" in the medical world because there is ALWAYS an exception. Basically, he told me that "all" CP kids have low muscle tone but are very rigid...hmmm...I just stated that the CP spectrum is so WIDE and that some CP kids can function normally. His comeback...not many...I was half asleep and didn't argue. :)

Monday is our day of answers...okay maybe not answers, but plan compilation day. It sounds like the EARLIEST we will be home is Tuesday. But no one has dropped the "d" word yet...discharge. I assume because there are still too many unknowns.

Chris is just not quiet himself today. Tired, fussy and not smily much at all. As he lays in bed, he just looks like a little rag doll...okay a big rag doll. He has the elbow restraints on and believe it or not, hasn't been fussy about them much at all. He just has trouble itching his nose and doing his sign language.

My parents, sister and her husband are in town and it was so refreshing to see them this a.m. They are people I'm used to seeing every day. When my Mom and Dad were walking in the room, Chris lit up for the first time today (1130 a.m.) and lept in to Grandma's arms.

He's not eating much today and it has me concerned that the tonsils are swelling more, but we shall see. Dr. Colombo confirmed this a.m. what we already knew...they're huge!

Wish us luck...the next time I update, we will have endured the NG placement.