Tyler's AST, ALT, GGT have all come down nicely which is a good sign. It may take a few weeks for his bilirubin to trend downward which is currently at 11. They will continue to monitor his liver once a week at UCSF until his heart surgery. He was up about every 1.5 hours last night which was a good thing so he could eat. He wasn't crying that much which makes night feedings fine. The pregestimil seems to give a better result with the color and consistency of his poop. Hopefully it will help him absorb some fat. It took him a while yesterday to start eating it which they say is normal This is Scott 1 year ago discovering his tongue. I imagine this is what Tyler feels like with his new formula.
4 comments:
Our friends have had their boy on progestimile for a really long time... They buy it off the internet for half the price.. Ebay I think... As long as it is not open then I think it is safe... Good luck... Glad to hear he is doing a little better.
This picture of Scott brought back great memories! He was so funny when he discovered his tongue. It sounds like you've had a better week with Tyler. It sounds like you are on the right track and heading for his heart surgery.
Good to hear he's getting better!!! Good luck with everything. I hope it goes well!
You know, I have found feeding, and the whole poop thing to be quite an ordeal. Sometimes Oliver screams because the formula I feed him has so much Iron. I try to counter balance it with lots of foods with fiber and other good things, but it is hard. Adding Bilirubin to the mix must make it even harder. I will think of you weekly and send all my positive energy your way. Hopefully by the surgery his liver will be nice and ready. You and Danny are doing such a great, HARD job, best wishes to you.
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