Yesterday was picture day in the ICN. Although David isn’t in school yet, the idea of picture day had me longing for turtlenecks, large brown glasses, slobbery retainers and awkward smiles in front of a white sheet in the lunch room.
Yesterday was family picture day, courtesy of Kathleen White, a local professional photographer, and the March of Dimes. Kathleen generously offers a free monthly photography session to all parents of children in the ICN. Like the Tuesday night harp music, it’s another perk of having a preemie. We got there early and dressed David up in an outfit that he still can’t fit into, and then nurse Sam ordered a special stretcher-chair to his bedside so that I could lie level to his isolette and he could Kangaroo with me for the pictures. Because of the oscillator machine and its stiff plastic tubing, which makes it hard to move him, David had not been out for a week.
After a bit of a production, the three of us gathered around together and had our first pictures taken as a family.
I wish I could say David was feeling and looking his best for picture day. Unfortunately he wasn’t, and we could tell that from his puffy eyes and his increased oxygen needs. I need to go back and re-write a few of my earlier posts, because although they were true at the time, they’re not as true now. David is not just premature, he is sick. And he’s no longer taking the common course, but rather “his own course” because he’s a “puzzlement,” as the doctor claimed yesterday. These are not comments that make us feel great. And I have held off from writing through the weekend because I don’t like to write to you until I have processed my thoughts and feelings.
They have not identified his infection yet and it’s not clearing up as fast as they hoped. He finishes his antibiotics today, but the consensus is that it might not be a bacterial infection. They’re still checking for a viral infection. That he has an infection is not the biggest problem, it’s his inability to be weaned from the oscillator that is concerning, and the infection is certainly not helping the process. We’re told that the longer he stays on it (the machine) the longer he stays in it (the ICN) and the longer road he will have to recovery once he leaves. We’re fine with taking a longer road; we’re not as fine with not knowing where it’s headed (it makes us uncomfortable and fearful). But that’s the daily struggle in this place, and although we can’t know all the outcomes, like when he’ll leave and what future problems he might face, we still have to take it in sometimes strained and wobbly strides.
After picture day and his Kangaroo care session he had a better afternoon. A week of meds and isolation and an unidentified illness…maybe what he really needs right now is just an extra dose of snuggle time.
Be back with the good news soon.
J & G & D