Lucas Camilo

It’s been 3 weeks now that Lucas has been home with us and in many ways the hospital feels like a distant memory… except when we show up there again, as we did the other day for back-to-back appointments.  The first was with “complex care”, the department that helps tie together all the different specialists that Lucas will be seeing, each with their particular doctors orders and recommendations.  We’ve already seen the GI doctor and in the coming months Lucas will visit the pulmonary doctor, the Ear/Nose/Throat (ENT) surgeon that did his trach surgery, the renal doctor to check on his kidneys and urinary reflux, an ophthalmologist, the neurologists at the brain injury clinic, and finally do a follow-up test on his hearing.  (Oh yeah, and we’ll probably have to visit the genetics department at some point too because supposedly they haven’t “closed the book” on Lucas despite having tested him for just about every disorder imaginable.)  Therefore, we were convinced that having the complex care doc help synthesize everything made sense, and indeed the visit was productive.

The other appointment we had on Tuesday was with the occupational therapist.  Kathy was one of our favorite people to see in the NICU in part because we learned so much from her about Lucas’s challenges and in part because she’s always so darn positive about his progress.  Mostly we like to see her because she’s really good at what she does, and once again she didn’t disappoint.  Lucas spent over an hour wide-awake rolling around on a mat, and Kathy gushed about how far he had come since leaving the hospital.  She concurred with a lot of the suggestions that we’ve gotten from his physical therapist and came up with some new brilliance: Kinesio tape around his torso to help lift up his diaphragm so that he takes deeper breaths.  One of the offshoots of Lucas’s extended hospital stay is that he’s spent a lot of time on his back and thus he has a narrow, rather flat midsection rather than the usual rounded baby torso.  The tape works to compensate for the shallow diaphragm that results from his body shape combined with his early breathing troubles.

We were really excited after the visit with the occupational therapist and happy that Lucas did great spending nearly four hours away from home on Tuesday.  But yesterday was a tough day as emotions and responsibilities seemed to pile up.  Lucas was fine but his parents were stressed out, having trouble dealing with all the follow-up we need to do for his appointments, prescriptions, insurance, not to mention checking in with the home health and equipment rental companies, dealing with a busted kitchen sink, still pumping breast milk five to six times a day, plus doing all the usual stuff that parents do with their babies like changing diapers, giving baths, feeding, washing clothes…

You may remember that the roller coaster metaphor is used frequently when talking about having a baby in the Neonatal ICU.  Although we were extremely focused on our goal of going home for months, we knew that leaving the NICU wouldn’t be the end of our challenges.  Of course being home is not nearly as stressful as the hospital, but the ups and downs continue.  We can go from a great day like Tuesday to a really emotional period without really knowing what happened in between.  A lot of it depends on Lucas and how he’s doing on any particular day, but a lot of it is also about the uncertainty of the future.  Lucas improves and we share each positive development with our community through this blog; and yet in the back of our minds we know that he has never been diagnosed with any underlying condition and so his prognosis remains impossible to know.  Sometimes that fact weighs on us, along with the anxiety of having to be by his side all the time, prepared to suction if his airway suddenly becomes obstructed.

Perhaps Wednesday was also a hard day because we said goodbye to Alice after a full week of good times.  Having good friends and family support us in the way that Alice did over the last week is amazing, and sometimes you don’t realize how important that additional presence is until it’s gone.  We thank Alice for all her help and look forward to having our respective families visit and stay close by in the coming month to continue such support.