April 9

Our little Elsie continues to do well. The swallow study hasn't happened yet; moving to Room 3 was a little stressful for her, as it's a bigger room with more babies, more people in and out, more noise. So they have given her a few days to stabilize. Also, they want to try a few things with her before the swallow study; such as placing a drop of milk on her tongue, or dipping her pacifier in milk and letting her suck it off. They really want it to be a positive experience when she does try feeding by mouth, so they are trying to prepare her for it and not rush. I think it should be happening within the next few days, but we'll see. They are also planning on her decreasing her oxygen flow today or tomorrow to 1.5 liters per minute. AND they removed her feeding tube from her mouth and it's now going down her nose. Apparently, she kept pulling the tube out of her mouth, so they put it down her nose so that it will hopefully be less irritating to her. This is also another baby step towards feeding by mouth.

Elsie and I have been working with an occupational therapist (OT) to teach Elsie about "positive touch". In the NBICU, preemies unfortunately experience a lot of unpleasant things related to their medical care; such as getting tubes stuck down their throat, getting blood drawn, having IVs inserted, and all other things that suck when you are an adult but are probably even more horrible to experience if you are a tiny premature baby. As a result of all this unpleasantness, preemies are more susceptible to developing aversions or hypersensitivity to touch. Meaning, Elsie's been through so much that when she hears someone approaching or feels someone waking her up, she kinda braces herself, like, "What are they going to do to me now? Whatever it is, it's probably not going to be fun. Earth kinda sucks." Just kidding, Earth doesn't suck.

Anyway, we are trying to work with Elsie to teach her that not all touch is negative. The OT who has been working with Elsie has made a list of some of Elsie's "Avoidance Signals", which are things that Elsie does to show that she is feeling stressed out. Also, there is a list of "Coping Skills", which are things that Elsie's parents and caregivers can do to help her cope and relax.

Yesterday, we were working on some positive touch techniques, and I think we rushed into it. Elsie's oxygen needs went way up, she was showing pretty much all of her avoidance signals, and was crying more than I've ever seen her cry. It wasn't super fun. So today, we took things a LOT slower, and the difference was amazing. Elsie stayed relaxed and calm the entire time, and didn't go up on her oxygen needs at all. The OT kept reminding me that "slow and steady wins the race," which if you knew me in high school while running track, that was definitely not my philosophy. But in this case, I will change my hasty ways and take things slow with sweet baby girl, if that's what she needs.

No tubes in my mouth!!