Day 8

I can't believe we are already on day 8, this has gone by so fast!  I have been feeling a little discouraged, but today was better and even though we only have two more days with Heidi here, I am feeling a lot more hopeful that the boys will be able to get off of their feeding tubes soon.  We gave them a little more formula through their tubes today because they were having such low energy and not feeling well enough to do anything. James was hanging his head all morning and looked so sad.  Then around 11am he brought one of his feeding bags  ( that connect to his feeding pump) to me, and said "lunch" in the saddest little voice.  It broke my heart, it is so hard not being able to feed them when I know that will make them feel better.  I did give some through his tube after that, and Heidi and I decided that they need more energy in order for them to succeed.

They both drank a few ounces of chocolate milk throughout the day, and we are starting them on a routine of sitting at the table and having a drink and snack every few hours.  They have always been happy with being on a schedule and knowing what to expect, so I think this will help them out a lot.  Heidi will be leaving on Wednesday and I am a little nervous about doing this all on my own when she's gone.  But being on a good schedule will help, and I will be able to call Heidi whenever I need to.  She thinks that within a couple weeks to a month both Sam and James will be drinking enough to not need their tubes anymore.

I wish I could say they will be completely done with the feeding tubes by the end of day 10, but I am really happy with the progress they have made.  The main goals of this ten days are that they start to recognize hunger and that eating/drinking makes them feel better, and to have more confidence and less fear about putting things in their mouths.  They have definitely accomplished those goals and that is so amazing!   I know they will do even more amazing things in these next few weeks!