Today was a good day

Evan's leucine (that's one of the amino acids he can't break down. It's the worst of the 3) levels are dropping as they should be and he is becoming more and more alert. He spent more time awake today than he has in his entire 2 week and 4 day life. It was so wonderful to be able to look into his beautiful blue eyes! Seeing them helps to realize that everything is going to be okay!  He has also been starting to take formula from the bottle. Considering he is still on a constant drip feeding tube at 21 mL per hour, the fact that he still wants to eat is a good thing. Hopefully that means that when we stop feeding through the tube he will realize he is hungry and eat all his meals from the bottle. At this point, the goal is to get his leucine levels down to where they need to be.  If things continue to progress as they have, I am guessing that will be in 2-3 days.  Once his levels are down where they need to be, the next goal is to get him feeding completely from the bottle. We will probably start this by feeding him with a bottle and whatever he doesn't eat in that feeding will be given to him via tube in a bolus form. This will mimic the normal feeding pattern where food enters the body at one time and then is slowly burned off eventually leading to hunger.  This is much more like the body's natural process of feeding than a constant drip feeding tube. Hopefully he does well taking from the bottle and we don't have to spend too much time relying on the feeding tube.

During this time we will be working closely with the dietician and the geneticist to determine how much and how often Evan will need to eat. He will be getting both his special formula and either breastmilk (I have quite a bit pumped and frozen) or regular formula.  The dietician will help us to determine how much of each he will need to keep his levels in the normal range.  Once he is eating fully from the bottle and we have his diet figured out we will get to go home. We are expecting to be in the hospital for at least another week, but at this point there finally seems to be a light at the end of the tunnel.

Thank you all for the messages, thoughts, and prayers.  It is so wonderful to know we have such an amazing support system of family, friends, and of course our military family as well.  Keep the prayers coming; they are definitely working! :)