When a demotion is a promotion

Kylie has been in what is called a “level three” NICU since she was born.  She has roommates in incubators, on respirators, and other scary machines.  For a few days now, we’ve been wondering why she is still in level three, not two.  I’m not exactly clear what the line is between the two, but I know there are more kids per nurse in level two.  Anyway, the decision was made today that once a bed opens up in level two she will be moved.  And that is one step closer to coming home.

 

We met with both the occupational and physical therapists yesterday.  Due to the genetic problems she has, Kylie’s hands are in fists, her elbows and knees do not fully extend, and she has other flexibility problems.  My sister Jennifer has many similar problems and has very limited mobility.  The nice thing is, therapy has come a long way in 32 years.  Kylie now has gauze balls in her hands, slowly forcing open her fingers.  The gauze will eventually be replaced with hard splints.  She also is getting stretched and worked on each day, to loosen up her other joints.  They told us that once we leave the hospital we can get therapists to come to the house 3-5 times a week to work with her.  Obviously, we will learn and do a lot on our own too, but it is nice that there are those kinds of options available.  Hopefully this will allow her to have normal or close to normal movement. 

 

Another great piece of news is that she ate better today.  They feed her 45 cc’s (1 ½ oz) of milk every three hours.  Yesterday, she only took 7 cc’s by bottle.  Today, she took 35.  Not bad progress in one day, huh?  She is choking a bit when she sucks, but she’s improving on that too.  Choking can mean the milk is going down the wrong tube, into her lungs.  It doesn’t seem to be a serious problem though.  Once she can take a full feeding without choking (she is given a bottle by the occupational therapist once a day and nurses whenever Amy is able to), they will work to get her on all bottles and off the feeding tube.

 

Ok, now for another “non-Kylie” moment.  After Dallin's bath he bounced around the wet tub avoiding Amy until he slipped and split his chin open on the edge of the bathtub.  He and mommy both screamed like he'd died or something, and with the water it made it look like he was bleeding to death.  One Dora bandaid and a short car ride later, he ended up in an urgent care unit where they had to restrain him to close it up.  It was nice that they could glue it shut and not have to stitch.