We had a big milestone yesterday. Both the girls had a trial off their breathing support. Neither has really been on oxygen for very long, but they have needed a machine which maintains pressure on the airway, making it easier for them to inflate their lungs. So far the “trial” has been successful, and while they may go back on if they tire out, they’ve both lasted well over 24 hours. As one of our wonderful nurses said, “They can’t stay in kindergarten forever!”
Even a few days ago, C didn’t have much stamina when she was off support for things like baths. But she’s had very few “dips” (in oxygen levels). B has done very well too – she does have more frequent spells, but I think it’s partly because she’s smaller and when her stomach is full at the end of her feed, it takes up a lot of breathing room.
There are many nice side effects to having them off the support – they’re much easier to hold for one. We don’t have to tape four tubes to the chair, and their little heads aren’t weighed down by the equipment. The only wires on them right now are the leads monitoring their hearts, breathing and oxygen levels. Also we get to see their little faces, since the hats and masks obstruct them. B’s face was highly indented by the straps, and she’s already looking much cuter! Finally, if they can manage without support and too many dips, I can try nursing them. Right now they are tube-fed but both of them are acting like they will be ready to feed soon.