Lucas Camilo

Life with Lucas in the NICU on this “Day of Indigenous Resistance” was pretty uneventful. His trach seems to be doing it’s job: with a more stable airway Lucas has had no episodes of apnea or “desats” (low oxygen levels) over the last 24 hours. In fact, the ventilator settings are down to about as low as they can go again and Lucas is taking a lot of breaths over the machine.

Unfortunately, Lucas puked more in the night while we were gone, so the doctors have slowed his feeding schedule and taken the fortifiers out of the breast milk to see if that does the trick. Of course, we suspected all along that breast milk couldn’t get any better, but the doctors wanted to beef Lucas up (as do we), so they’ve been adding a few extra calories to his milk. When Lucas got weighed on Sunday he was up over seven pounds (!!), so maybe those few extra fortifying calories did their job, but just aren’t necessary any more. Anyway, after suspending his feeding for a while, he’s now been getting straight milk all afternoon and is keeping it down so far.  Which is to say that “uneventful” is a good thing today.

Speaking of breast milk, we continue to receive wonderful support in the form of food (which Krista quickly converts to milk) from many friends – thank you, thank you, thank you!  We’ve said it before, but we feel so much gratitude to everyone who has come and visited or brought us food or sent us music or blankets or Vermont maple syrup or loaned us clothes or offered advice or held us in their thoughts and prayers. While Lucas is growing and getting better every day, he still faces a long road of gaining strength and learning to breathe, eat, and move in the world. And like all parents, we’re better able to be there for our kid when we have support.

Many of those who have been there for us are friends/comrades we know through the groups we’ve been most involved in: namely, CISPES, Jobs with Justice, Resource Generation, and the All Souls Unitarian Universalist Church.  Organizing is all about building community, and we feel privileged to have such a wonderful community through the activist work we’ve participated in.  The CISPES crew has been there every step of the way, visiting us frequently while also keeping Burke busy with phone calls and emails (he’s still working part-time as he transitions out of his executive director job); meanwhile, the good folks at Jobs with Justice (where Krista worked for over a year) and Resource Generation (where Burke is now on the board) have sent cards and flowers and also brought us food.  Finally, generous friends from All Souls Church (where Krista has become a member of the community) have cooked more lasagnas and other tasty treats than we know what to do with.

Even folks we’re just getting to know, like our new neighbors at Mother Irving (the name of the 3 adjacent houses we’re now a part of), have been generous, bringing us food, sharing freezer space, and even checking in with us about noise levels at future house events.  If Lucas can sleep through having tape peeled off his face he can probably sleep through some ghoulish yelps from the upcoming haunted house next door. But nonetheless, it’s nice to have our new neighbors looking forward to Lucas’ homecoming and worrying about his well being.

Later this week we’ll get a tracheostomy training at the hospital and at that point we plan to give a little virtual tour of Lucas’s new accessory.  For now, here’s a quick video of mom bragging about his finger-sucking…