We are adjusting to life with Kylie, little by little. We are getting to know her personality, what calms her down, what really annoys her, etc. For example, it really annoys her when Dallin steals her pacifier. She loves to bounce. I couldn’t figure out why she always quieted down if I was upstairs and walked down. Why would she like walking down stairs? Finally it clicked that it was the bouncing motion, not the stairs.
Another thing Kylie likes is Emily. When she is fussing, Emily sings to her and she calms down. It is pretty cool, she really responds to her. Emily, of course, eats this up. She holds Kylie for long periods of time every day, helping to feed her, or even just sit on the couch holding her for fun. She also acts as Kylie’s bodyguard, protecting her from Dallin.
We are doing our best to do our own physical therapy on Kylie. All of her joints are stiff, so we have stretches for her toes, ankles, knees, hips, elbows, and shoulders. Man, does she hate her stretches! She still has her splints for her hands, to help unclench her fists. Next week we will finally get in to the physical therapist. They will be able to make a long term plan, get better splints, etc. We had thought we would get home health to come do PT with her, but that is not the case. There is a place not too far from home though, in Missouri City, that we’ll go to. I say we, but Amy will do most of it. I’ll go every once in a while, but she’ll do the heavy lifting.
As I said before, feeding Kylie through a tube is kind of weird. It is getting less so, and we’ve even found a silver lining. We set up her feeding pump at night, and it slowly feeds her all night long so we can sleep. Kylie is a great sleeper, probably because she doesn’t get hungry. Five hours is the worst night we’ve had yet, which is amazingly good for a 2 month old. We wake up more than that though, since she’s in our bedroom. I never have liked having babies in our bedroom. They grunt, squeak, and make noises in their sleep. Mommy insists, so that is how it will be… for now.
Due to the fact that Kylie doesn’t swallow properly, she can’t eat normally. This also creates other problems. She can’t even handle the normal secretions in her throat very well. She is always coughing because of the liquid in her chest and throat—the normal stuff you and I never even notice. (See: grunting comment above.) Because of this, our doctor has urged us to be cautious with her. They always say to be careful with a newborn around kids and people, to keep them from catching germs. We need to be extra careful (translation: actually follow the doctors orders for once) because when she gets sick it will be extra bad. If she has trouble with normal saliva, imagine when she gets a cold.
All in all life is finally starting to settle in. We are slowly beginning to seeing the glimpses of a new normal.
