some steps forward ... others backwards...

First of all thank you all for praying for us and for your willingness to help out with meals and whatever else we needed. We have been home since Friday afternoon and are very grateful that our stay in the hospital was short. This was actually one of the shortest stays we've had!

Caleb is doing well cardiac wise. His oxygen levels are in the low 80's and he looks amazing for having had heart surgery less than a week ago. He is getting the post-Glenn headaches that we were warned about so he is not sleeping much and is extremely fussy and not very happy. The headaches will stop around 1 month after surgery when his body gets used to "the new piping". Tomorrow we have our post-op cardiology visit and expect a good report from Dr. Mas.

GI wise...Caleb's terrible reflux is gone. Thank you Jesus! The bad news is that we had to re-insert the feeding tube Saturday night. Caleb has been eating without the aid of a feeding tube since the night before Thanksgiving and doing great, but the stomach virus he got the week after Christmas totally threw him off his groove and he has not recovered. Recently we realized that his feeding problem is far from being over. He has to have some type of eaing disorder perhaps due to all the negative stimulation he has recieved to his mouth - being entubated so many times and for long periods; the feeding tube; the about 15 doses of terrible tasting medicine he takes a day; all the milk they have put him on to get him to stop throwing up... The last 2 months the speech therapist and we have tried everything we can to get him to swallow baby food, but he just won't. And now we are back to not wanting even milk. Once again we feel the threat of having to operate Caleb to put a G-tube (permanent feeding tube that goes directly into the stomech). It is super sad and frustrating for us so this is a major prayer request. If you have any suggestions, we welcome them.