Lucas Camilo

Today Lucas gets big bonus points for strength and courage because he sailed through a spinal tap last night. (His parents do not get the same badge of courage for the spinal tap… it took numerous doctors to convince us that it was not only a common procedure in the NICU with few risks, but also necessary for Lucas.)  The neurologists have been monitoring the fluid in his brain because hemorrhaging like he had when he was born often leads to a blockage of the normal channels for re-absorption of fluid. Indeed, that happened to Lucas, so instead of allowing the fluid in his ventricles to accumulate to the point of putting too much pressure on his brain, the doctors decided to drain some of the fluid last night. We’re crossing our fingers that they were able to drain enough fluid, and that it doesn’t re-accumulate. We don’t want any repeat performances of the spinal tap, or to get to the point that the fluid has to be drained out through a soft spot in his head.

There are days that it is hard to stay positive, moments when his visible steps of improvement seem so tiny. His body is still mostly limp like a rag doll.  He still needs help breathing, and the last couple times we’ve held him it seemed to make breathing even harder. So today we reversed roles with the doctors: whereas in the past they sometimes gave us grim outlooks while we fought to stay positive, this afternoon it was Dr. Stone that reminded us of all the reasons to keep up hope for his full recovery.  Lucas is breathing over the ventilator a little more every day, he said, much more than last week.  He’s tolerating breast milk so well (up to 25 ml every 3 hours!) that by this weekend he will be getting all his nutrition from the milk. In fact, the only thing they’ll be putting in him besides the milk is saline water, and that’s just to keep the IV operational in case they need it later.  Finally, he reminded us again of the amazing ability of infant’s brains – unlike adults  – to recover from injury.

Though he won’t be doing push-ups anytime soon, every day Lucas moves a tiny bit more on his own.  His grandmother Susan sent him a preemie sound machine that mimics the sounds he heard in the womb – a heart beat and the gurgling of digestion. Although the machine is meant to soothe babies who have trouble sleeping, Lucas seems to perk up at the digital gurgling noises, and today he squirmed and danced for a while when the machine was on. Of course we’re trying to convince him that his new Woodie Gutherie children’s album is where it’s at, but we’ll give him some time to develop his own musical tastes.

(Lucas rocks out to dolphin noises on his sound machine)