"Sleepy Santa" is the talk of the unit this afternoon. As word spread from one nurse to another that he looked so cute sleeping in here, many have stopped by to peek in and look. I love that he is able to make them smile. :) Isn't he precious?
The plan, for now, is to go home (well, back to our Cincinnati apartment) on Thursday! I didn't think I'd feel comfortable enough taking on his care to WANT to leave, but by now I feel I NEED to leave the hospital. Five weeks has been long enough! I also have to keep in mind that 97% of kids from this unit are readmitted at least temporarily. Most likely in the coming weeks or months he will develop a fever and need to come in for a few days. It could happen more than once. Some kids come back long term, but the ones whose parents I've met have different diagnoses than WAS. (In fact, I haven't met any other WAS parents at all.)
Please pray that Nathanael would nurse well. His weight went down two days in a row as we stopped tube feeds during the day in order for him to feel hungry so we could try to return to nursing. His weight came back up a little today, but we want to see it back up just a little more, and we'd like to see him eating better, before we give him so many hours off tube feeding again. He seems to remember how to nurse, I just think his little tummy doesn't have much room, as it has been empty for almost four weeks. The adjustment should take time. So we will go home with the feeding tube still in, and a special pump system to deliver mommy's milk at a rate of 2oz. per hour for 12-16 hours a day/night.
Please pray for a smooth transition out of the hospital. Jeff will be coming from Columbus to help us move, then my parents will come in for the weekend to help me, and when my dad goes back to work my mom will stay.
Would love to write more, but "Santa" just woke up... :)