Headed in the right direction

There have been some major changes in the White House over the past couple weeks. 

The biggest news is that we have stopped Zachary's continuous overnight feedings.  Now, instead of giving him 42ml of tube feeding formula hourly during the night, we're giving it to him during the daytime, in addition to what he had been getting during the day.   Might not sound like such a big deal, but it is a major step toward reestablishing his hunger cycles and eventually jettisoning the feeding tube, though that's probably still a ways away. 

So now he gets five "meals" everyday.  The sittings start with a couple tablespoons of pureed baby food or yogurt, and maybe a cookie or veggie stick, which he licks, followed by a bottle of Pediasure, which we don't like so much because it consists primarily of sugar and water.  Then, we subtract whatever remains of the bottle from his total fluid goal for each feeding and give him the remainder though his tube.  We're hoping that this will make him hungrier and more likely to eat more solid food by mouth so we can have the feeding tube removed sooner rather than later.

We also had to part ways with our primary night nurse, who was working five nights per week.  The details aren't so much important; we just had grown increasingly uncomfortable with some things she had been doing.  We've decided not to fill her shifts for now, so we'll take turns staying up overnight to monitor Zachary.  Might be more physically challenging for us with less sleep but in the long run we think it will be much better for us mentally.  And we'll still have a nurse here on Friday and Saturday nights from 11:00 p.m. to 7:00 a.m. the following morning. 

Our little guy also has developed separation anxiety in a big way.  He starts wailing and the waterworks come quick if we leave the room just for a moment, or even if we turn our heads and aren't paying as much attention to him as he thinks we should.  Seems like normal baby behavior but it is sad to see him get so upset. 

These steps are taking us toward a more normal existence, whatever that means.  But the important thing is that we're headed in the right direction.