Lucas Camilo

Today we met another family in the NICU who had been in the hospital a couple weeks more than us, and they warned us that every day is up or down or both.  We’re definitely finding that to be the case.

Although Lucas’s vital signs continue to improve, he’s still moving much less than most preemie babies.  They call it hypotonia, or low muscle tone, and it’s a big part of what is puzzling all the specialists.  Today we saw more of those specialists and here’s the latest:

The neurology team says that the MRI came back showing more cranial bleeding (which isn’t necessarily surprising for a pre-term baby), but no significant damage to Lucas’s brain or spine.  They said that they were now suspecting that his lack of movement is caused by something in the nerve/muscles, not the brain.  We weren’t sure whether this was a relief…

Then the neuro-muscular specialist came by and he examined all three of us.  Burke and Krista had to squeeze his hand, close our eyes tight, say lalala, gagaga, and answer questions about family history of muscle problems (we have none.)  He then examined Lucas with more taps and squeezes.  He told us that based on the bedside examination he saw good neuro-muscular functions and that therefore Lucas likely does not have a neuro-muscular disorder.  He recommended that the neurology team do more looking at Lucas’s brain.

Again, it’s hard to know whether this news is good or bad.  Lucas’s great nurse today told us that moving away from neuro-muscular problems is a good thing — the brain is stronger and more able to compensate or repair itself if it’s been injured, she said.

Finally, we didn’t see the geneticists today as they’re waiting for some very specialized chromosome tests to come back.  One thing they’re testing for is a rare disorder called Prader-Willi Syndrome, which causes severe hypotonia in babies.  However, our own google research found that a common physical sign of Prader-Willi in babies is small hands and feet.  Given that Lucas’s feet are already a baby-size 10, and that every nurse comments on his long, long fingers, we’re not holding our breath for the Prader-Willi test to come up positive.

So we wish there were more good news to report, but perhaps ruling out, one-by-one, the really bad diagnoses IS good news.

Look out for more pictures and reflections later tonight…