Lucas Camilo

Yesterday Lucas tipped the scales at 2280 grams, which according to the conversion calculator makes him over 5 pounds for the first time. God job little buddy! Lucas weighed 4 lbs 4 ounces when he was born but dropped to 3 lbs 12 ounces in the first days of his life. Since he started on the breast milk two weeks back he’s been slowly climbing up in weight and he’s even developing a bit of a gut.

Five pounds is actually the somewhat arbitrary marker in some NICUs for when a baby is getting ready to go home, but we know that Lucas still has a ways to go. He may get another shot at extubation in the coming days, and if he is able to breath on his own for an extended period of time then that would be another step in the right direction. But despite the progress he’s made in the last few weeks, he still isn’t moving nearly as much as a baby his age and size should be, and his hypotonia (low muscle tone) remains a mystery.

The doctor’s haven’t given up on finding a diagnosis, and continue to test Lucas for a variety of increasingly rare disorders. We, on the other hand, understand that they may never reach a diagnosis, and so we’re mostly waiting and observing to see if he continues to get better. After a couple of very positive days earlier this week, Lucas has been somewhat more sleepy and lethargic the last 2 days. This could mean that his hydrocephalus (fluid in the brain) is increasing again, so they gave him a head ultrasound this afternoon to check things out. Then suddenly he started wiggling around more again, as if to say “I’m doing ok, thank you very much!”

Finally, the little guy continues to receive lots of visitors, and in the last week he’s met a bunch of new friends: Rebecca and Vera, Shana, Dan Moshenburg, Ulyses, Aaron and Evan (1 1/2 year month old Earl had to wait in the lobby), Lisa, Jacoby, and Claudia and Geoffrey. He also got return visits from Isham, Alexis and Heyward, and Simon (along with Paola and Frijolito, who hadn’t yet met Lucas.) Meanwhile, the spirit of our hard-core cycler friends – who biked 180 miles last weekend – lives on in Lucas’s beautiful blanket, made by Freddy and Story and signed by the crew.