It's hard to believe another month has passed and Noah is 5 months already. He is 5lbs 13oz and 20 inches. This is huge weight gain for Noah so we are very pleased. We have started to slowly add the breastmilk back into his diet and so far he seems to be tolerating it ok and his weight hasn't shown a dramatic difference. So hopefully we can continue to feed him breastmilk with neocate. We have also managed to wean him down to 16hrs a day on the pump (9hrs at night and 7hrs during the day). Today we will see Dr Hancock and she will change his foley tube from a size 10 to a size 12.
Noah is struggling with a cold right now, we pray that it doesn't turn into anything serious. His LFTs (liver function tests) and BUN are all still elevated, likely still from the TPN, which means weekly bloodwork to monitor the levels and make sure they are going back down to normal. He is very difficult to get blood from, so these trips to the lab are rather unpleasant.
Developmentally, Noah continues to lag way way behind. At this point it is difficult to know how much is related to his chromosome deletion or spending half of his life in hospital. He is now seeing occupational therapy and physiotherapy once a month. So far we haven't found it very helpful.