For any of you paying attention, yesterday (Tuesday) was Claire's 6 week birthday (42 days). You may remember, the cardiologist told us that she would probably start having more severe problems starting around 6-8 weeks, due to her bad heart pumping most of her blood to her lungs, and not to the rest of her body. They said the lung pressure of newborns is much higher at birth, and this pressure starts to decrease to normal pressures around this time (6-8 weeks). This increased lung pressure has been helping push her blood toward the rest of her body. Well, I have to tell you, it seems they are pretty accurate. We "think" we can tell a difference not only in her appearance, but also in her alertness (both seem to be deteriorating). She still has some good days, however, it seems it is more like "good hours" instead of days now. Her breathing seems more difficult most of the time too.

On a lighter note, she appears to have her days and nights mixed up, sleeping a lot of the day, and awake (and crying) almost all night. This has been going on now for 5 days, and yesterday (Tuesday), I thought I had figured out why. You see, we keep her in our arms or her bassinet for the whole day, and at night, we put her back in her incubator (we call it her "house"). The only reason for the incubator was to help her maintain body temperature, which she can do by herself now. So anyway, I decided we were "cooking" her by night (her house stays at 85 degrees). I too would stay up all night and cry if the bedroom stayed that hot (remember after the hurricanes and NO power for weeks). Anyway, we could not wait to go to sleep last night, thinking we would finally get a good nights sleep (for us now, that means feeding her for 1 hour, then sleeping for 2, and then getting back up to feed her for another hour-sleeping 2 out of every 3). Well, needless to say, we must not have been "cooking" her after all, because she still stayed up from the 11pm feeding until the 5am feeding. So when people ask us how we're sleeping, we say, "we're sleeping just like a baby" (you can interpret that many different ways).

Please don't misunderstand us, Claire is a very easy baby to care for most of the time. The only difficult thing about dealing with her is the "stress" level of not knowing. We never know if whatever she is doing at that particular moment, is a Trisomy affect, or just a normal infant cry, or if it may be her last cry. Occasionally, she appears to be crying out (ever so softly) as if in pain, but even normal infants cry out this way (colic, gas, BM, etc). So we just treat her as we did Camille, or any other infant, and just try to treat any symptoms we detect, and if we can't detect any, then we try to perceive something like colic or gas and treat that. If she were older, we could blame teething, isn't that kind of a catch all for toddlers crying for about 3 or 4 years?

When you see Claire, please don't hesitate to tell us if you think she looks better or worse than the last time you saw her. We really would like your HONEST opinion. We see her all day every day, and that makes it hard for us to notice changes over time.

With all this said, understand why we might look as if we have bags under our eyes, or look like we're in our 40's, instead of our 20's :-) .After all, our child is now older than we are (if you count her days as years).