Are We Close?

Here's Toby visiting his sister again. It doesn't get any cuter.

It's hard to describe the place we're in right now. It's hard to know how to feel. Mostly we just get through each day. It's amazing how fast anything at all can become routine.

For me (Josh), I'm almost back to being a single dad. On the way to work I take Toby to wherever he's spending the day, sometimes leaving him at home with someone. I usually get home before Michelle (after picking Toby up again) and make dinner. But at least now Michelle does come home and have dinner with us, and then she puts Toby to bed.

For Michelle, feeding Alicia is the only thought each day. How many spells will she have per feed? How long will she suck? Is she getting enough milk? Are there enough calories in the milk, or will she need a supplement of fortifier? Right now the routine includes eight hours per day of only breast milk, and then either tube feedings or, yes, a bottle. Last night she had one; tonight we're trying for two. We accept the necessity of bottles and are hoping they will make it possible for Alicia to come home sooner. It could be a week. It could be three. It could be just about any number you care to name, really. We try not to think about it too much, and we think about it constantly.

For Alicia, life continues in the quiet, monitored world of the ICC. In her private room, nurses don't answer her monitor as swiftly. She still has spells, but not as often.

She has "moved" five times in her life, living in five different rooms (which means she moved back to one of them after leaving it). She doesn't know there's only one move left, and she doesn't know how huge it will be. We don't know how she'll react. Whether she'll be angelic, easy-going, the way most parents of later preemies (30+ weeks) describe their babies. Whether she'll be ultra-fussy and touchy, the way most parents of early preemies describe theirs upon coming home. Totally new surroundings, new sounds and colors, the room a different temperature...and a hundred other things that won't ever cross our minds, but she will notice them.

Excitement, impatience, anxiety, boredom, joy, stress...this is our life. But the end of the tunnel is getting closer. Are we ready for the light?