Rowan’s EEG came off this morning so it’s that much less unwieldy to hold him at the bedside. He’s still on the BiPAP, but he’s slowly being weaned down in an effort to get him off of it completely, or at least onto something more comfortable like a High-Flow device.
He was very fussy this afternoon – wouldn’t sleep and was crying regularly. Amber and I were both trying different things to get him to calm down: rocking him, holding him in different positions, giving him a soother. It felt like typical parent-of-a-three-week-old stuff. Kinda nice. Never did figure out what the issue was, really, but as I type this he’s been sleeping peacefully for a couple of hours. It was probably our calming parental presence that eventually got him to nod off, but I guess there’s also a chance it was the dose of sedatives that the nurse gave him.
Tomorrow Rowan finishes up a seven-day course of antibiotics, so that’s one less thing to think about. The metabolic testing has come back and we’ve been told it’s completely negative, so we seem to be zeroing in on something genetic causing these issues. The plan is to sit down with the genetics team tomorrow to review the results of the tests that have come in, and then at some point Amber and I will also have some genetic tests done on our blood to identify the culprit see if either of us also has any of the genetic markers that could be causing some of these issues.
