Sunday, November 23, 2008

Taking it one day at a time

Almost everyone involved in the NICU has advised us to take it "one day at a time". Life in the NICU, they say, is one long roller-coaster (and not the fun kind). Doctors and nurses talk about two steps forward, one step back. What does all this actually mean?

Useful fact: Children in the NICU have a variety of problems, each evolving at its own rate. One day, all indications will be that Problem A has been licked and quickly resolving, while Problem B at least didn't get worse. That's a good day. On another day, all the apparent progress on Problem A will be reversed and Problem B will show worrying signs of not being in any hurry to go away. That's a bad day. Meanwhile, of course, both Problem A and Problem B could have, in the worst case, very bad outcomes down the line for the kids years after they leave the NICU. And thinking about that really will drive you insane.

So taking it "one day at a time" seems to mean, in practical terms, not getting too excited by good days, nor too depressed by bad days and, above all, not to dwell on the potential long-term consequences of all the manifold problems afflicting kids in the NICU.

Further reading:
  1. The great NEC scare of last week: How a bunch of good days for Max came to an end, but also how things didn't turn out as horribly as they might have. Yet.
  2. One of many preemie support website: But this one does use the phrase "roller-coaster" quite often, and is written by NICU nurse and parent of a preemie. And it wins my gratitude for its list of NICU nurse/doctor "Do"s and "Don't"s, where the "Don't"s start with:
    Don't: Call me "Mom." Please ask me what I would prefer to be called.