Lucas Camilo

One of Burke’s favorite times of the day with Lucas is the early morning: he gets to the hospital around 7:30 am most days and has a couple hours with the little guy before things get bustling in the halls of the NICU.  Its a great time to rock Lucas’s favorite children’s albums over the laptop, and its also a time when Lucas sometimes wakes up and gets his sunrise wiggle on.  When the nurses are out of the room, Burke sings along with Pete Seeger, and has re-memorized all the words to “Puff the Magic Dragon”.

In the next few days we’ll lay out a timetable for Lucas’s homecoming to Irving St. and needless to say we’re very excited, but also quite nervous.  Like the peaceful morning sessions that Burke and Lucas share, we realize that there are actually a few things that we’ll miss about the last two months in the hospital.  For example, having highly-trained, free “babysitters” around the clock is a pretty sweet deal!  Of course the nurses, residents and respiratory therapists who look after Lucas at night are a lot more than babysitters, but the point is that in the evening or on those rare occasions when we decide to drop by a protest or go to a movie, we know that someone will be with Lucas to make sure all is well.

Perhaps the biggest challenge ahead, then, involves us taking the lead on a lot of the responsibilities previously held by others.  A few weeks ago this wouldn’t have been possible, but Lucas’s gradual progress has opened up the prospect of leaving the hospital.  But though he’s getting better all the time, he remains a baby with special needs, and the new accessories he has acquired post-surgery are the most glaring examples of that: he can’t breathe on his own for now, and he feeds through a tube.  He’s also hypotonic, and though his strength and muscle tone has increased, he still doesn’t move around as much as a baby his size and age usually does.

So bringing Lucas home won’t be the usual baby homecoming, nor will it be what preemie parents think of when they imagine the storybook ending to a traumatic NICU experience.  Rather, it’s an unpredictable transition for us and Lucas, one that will involve a lot of patience, training, and anxiety.  We’ve got to learn how to suction his trach, clean the area around the g-tube, and what to do in an emergency… and that’s just the beginning.

Over the last two days Lucas has hit a little rough patch on his road home.  Things started off well today as he was back in mommy’s arms after a week-long post-surgery hiatus.  But the holding didn’t last too long as he had to jump back into the crib for a hearing test, and part way through that he threw up, so they had to delay the test until later.  To top it all off we humiliated him by giving him a comb-over following his bath.  He’s back on track now, sucking on his pacifier and looking around with open eyes.

Yesterday his urinary tract was tested and they found that he has Vesicoureteral Reflux, (VUR) which means that some urine finds its way back up towards his kidney.  His VUR  is only stage 2 (with 5 being the worst) so for now Lucas just needs a low-dose of antibiotics that will help avoid future UTIs (like the one he got a few weeks back.)  So we’re still encountering hurdles, and we’re still meeting with doctors, and at the end of each long, tiring, day we still pack up and head for home.  But not for long.  Because soon we’ll finish a long, tiring day and we’ll look around and find that we’re already at home.  And that’s great… even if its also a little scary.