Lucas Camilo

Lucas bounced back well from the exhaustion of his 2 days off the vent. There’s no doubt he was tired, and therefore a bit relieved to be back on the ventilator after working so hard to breath on his own. Ever since the trach collar was removed and the vent replaced he’s been very active and alert, showing off at times and acting a little fussy at others. He got a couple of shots yesterday afternoon and threw a fit, complete with racing heart rate, red-faced contortions, and even a few tears running down his nose. We think that he’s sick of the hospital and ready to come home.

It seems clear that the work of breathing on his own played a part in slowing down his growth. He recorded a weight loss again on Wednesday – the day he finally hit the wall on the trach collar – before finally gaining 150 grams yesterday. The doctors have been concerned about his weight gain and we admit that he needs to put some meat on his bones. Lucas’s weight is now down to 7 pounds 3 ounces which, according to a baby book we checked, puts him in about the 15th percentile (based on his adjusted age of a few weeks old.) By contrast, his length of 24 inches puts him in the 95th percentile for a baby his age. If you haven’t noticed from the pictures, he is one long, scrawny little dude!

We talked to a couple of doctors from the pulmonolgy department yesterday who gave us more insight into Lucas’s breathing challenges. They said that a baby like Lucas who’s already had so much trouble breathing – such as respiratory distress at birth, collapsed lungs, and weak muscles around his airways that limit the air coming through – will likely see continued struggles with his respiratory system in the early part of his life. For now, the effort of breathing off the vent is huge, something like 100% more calories burned, and so if we want him to continue growing and getting stronger in other ways then it will be important for him to remain on the vent some of the time in the coming months.

Meanwhile, we’re getting the house ready for Lucas’s homecoming (did we mention that he’s coming home soon! :-) Of course we’ve been mentioning it repeatedly for about 2 weeks now and frankly we’re getting a little anxious. But we have a target date of next Wednesday and we’re doing all we can to move forward with the many details that need to get worked out for his discharge (more on that later.)

And did we also mention that Lucas’s grandparents, Nonna and Papa, are back in town? Unfortunately they can’t see him because of the restrictions at the hospital, despite our best efforts to get a special letter for them. However, as a consolation prize they got to help set up his crib yesterday, and go shopping for all the little things he’s going to need when he gets home. Nonna, who’s an interior designer, approved of the Italian crib that we picked up for a good price on Craigslist, and she gave it the perfect touch with a skirt inherited from his cousins.

Speaking of his cousins, he also inherited a fancy new onesie from them, and it matches well with his favorite pumpkin hat…