Stacy talked with the geneticist today who confirmed that they sent out James’ bloodwork to Dave Wenger Labs in Philadelphia to test for lysosomal storage diseases. These diseases are inherited metabolic diseases that are characterized by an abnormal build-up of various toxic materials in the body's cells as a result…
James had his hearing screened today. Well, they tried anyway. The tech came while James was eating and there was so much electrical interference in the room that it was messing up the hearing machine. With 8 babies in the room and all them hooked up to various machines, I…
Stacy’s parents live close to the hospital, so Stacy picked up her mom on the way to see James this morning. He was fussy again this morning when they got there, but he quieted down after Stacy picked him up. Maybe he just needed his mommy. As discussed in rounds…
NICU Day 23 I didn't post yesterday because the only update was that they bumped his feeds from 25 ml of breastmilk over 3 hours up to 35 ml over 3 hours. He weighed in at 7 pounds and 9 ounces. NICU Day 24 After I got to…
They bumped his feeds from 20 ml to 25 ml over 3 hours. With the NG- and NJ-tubes that were inserted in his nose last night, he will start getting his meds through the NG-tube and his feeds through the NJ-tube. If you didn’t read yesterday’s post, the NG-tube goes…
James had some blood tested a few days ago for long chain fatty acids and it came back normal which means that he does not have adrenoleukodystrophy…thank God! Adrenoleukodystrophy (ALD) is a rare genetic condition that causes the buildup of very long chain fatty acids (VLCFAs) in the brain. When…
The occupational therapist (OT) came to see him and work on his swallowing. She was trying to work his throat muscles to strengthen them. The bumped his feeds up to 20ml of breastmilk over 3 hours. My mom popped in to see Stacy and James while I was at work.…