April 20th....again

So I guess I got ahead of myself last night and dated my entry as April 20th. Today really is the 20th. The Dr.'s continue increasing the amount of milk Jett receives. He now is getting 12 mls every 3 hours. His weight also continues to increase, tonight he was 8 lbs 9 oz. His output contiues to be steady so until there is a problem, they will continue increasing the feeds.

A pulmonologist who is a CF specialists came by today and spoke with Pj and I. He was very optimistic about the disease and the life expectancy of a baby with CF. It's so nice to hear good news from a doc! He ordered for Jett to begin Physical therapy on his chest. This is a preventive measure to keep his lungs healthy and help drain mucus. The therapist came in when I was there and taught me how to do it. The dr. recommends doing it for 15 minutes a day for now.

We also have a meeting scheduled with the Ostomy nurse this week. She will show us how to care for the ostomy once he comes home. The ostomy is his new and temporary "pooper", it is on the left side of his belly and continuosly drains stool. Because the stool is acidic, there are techniques and specific items they recommend to decrease the skin breakdown and infection around the hole. I am glad they are teaching us things we need to know when we get home....it seems like there may be a light at the end of the tunnel.

Love to All!

Liz