Elise had her feeding consult with a physical therapist this morning, and I was able to be there. The PT first had Ellie suck on her gloved finger in a couple of different ways to feel how she was sucking. Then she held her on her side (which we've recently started doing again rather than holding her in a sitting position since switching her to the higher flow nipple) and began the feeding. Ellie stopped breathing three times while the PT was feeding her. The first time simply tipping the nipple toward the roof of her mouth was enough of a reminder to get Ellie to breath again. The second and third time the PT actually had to take the bottle out.
With this, the PT determined that Ellie needs 100% attention from the person feeding her so as to have the feeder assist her in remembering to breath so that she doesn't have a spell. This will most likely mean that her nurses will need to have another nurse cover for them while they are feeding her since they can't have any distractions while she's eating. And when Kit or I feed her we need to give her the same undivided attention. If you look away even for a minute, she can start into a spell. She especially goes into them if the person feeding her looks away and talks with someone. As I mentioned, she also has trouble if she's trying to eat and poop or pass gas at the same time so we'll take the bottle out of she starts to grunt and get red in the face (her cues that she's doing one of the two).
The PT only stayed for about half the feeding, including watching me for a couple of minutes. She said I was doing a great job and was very attentive and understanding of Ellie's cues (hurray!). After the PT left, I finished feeding Ellie and she didn't have a single spell!!! She did start to stop breathing a couple of times, but I was able to either tip the bottle or take it out to keep her from stopping for too long.
So we have a little high maintenance eater. They can't predict how long it will take her to grow out of this; however, we can take her home with it once we get it a bit more under control.
Here's a picture of the little cutie from last night. Dad was getting her dressed while I took this; hence, the deer in headlights look from Ellie.