Lucas Camilo

Lucas had a quiet but good day on Friday: some holding, a bath, a new purple, flowered gown, and story-time with new Bread and Puppet books.  The ultrasound and tape measure show no more  head growth, which is comforting; meanwhile, Lucas is looking forward to meeting new friends over the weekend.

Below is part 2 of Mary Jo and Michael’s guest blog (part 1 is here).  Needless to say, it brought tears to our eyes.

Reflections on a Visit to the NICU (continued)

In the NICU, the almost-constant bedside sentries are Krista and Burke.  We thought we understood how important it was for them to be present, but we didn’t fully appreciate their role until we could observe it for several days.  Doctors and nurses change routinely and have multiple patient responsibilities, and specialists, who have no prior contact with Lucas, are called in for evaluations and procedures.  In this changing environment, Krista and Burke are the source of continuity and themselves constitute a “medical record system” that supplements the computers and, in some sense, is more inclusive and every bit as important.  It is instructive to watch and listen as Burke or Krista patiently corrects or updates the doctors and nurses who have forgotten or overlooked some piece of information or whose computerized records have not yet been updated to match Burke’s or Krista’s memory; as they describe Lucas’ most recent activity and their qualitative evaluation of his condition; as they ask quiet questions about possible inconsistencies or rival advice from different doctors and specialists; as they react calmly and tactfully (and sometimes not so tactfully) to miscommunications and misplaced advice.  They listen carefully, ask cogent questions, read available resources and, with alert perseverance, absorb the details, the context and the flow of NICU events, all of which allows them to evaluate the medical advice and the requests for consents to procedures with increasing knowledge, poise and confidence. It is impressive to watch and observe; the descriptions of medical information in the blog, while impressive, do not give complete justice to the process and the command that Burke and Krista have achieved.

Equally impressive is the nurture, large and small, Lucas receives from his parents.  One or the other will quietly steel away an place a hand lightly on his torso or his head when he is sleeping, reassuring him through the blanket that they are present and he is secure; sometimes they will unwrap him and touch him to give him the extra comfort of skin on skin.  When he is awake, they lead him through his calisthenics, stretching his arms and legs and getting him to grip and pull on their fingers.  A favorite image is Krista, her face three inches from Lucas’ face, his eyes appearing to watch her intently as she strokes him and talks and sings to him.  Burke does the same, and sometimes reads to him from the Washington Post, and sings (though not very well).  All of this, of course, is calculated stimulation designed to strengthen muscles and prompt more brain and neural activity.  And you have to believe that these small acts of love, commitment, devotion and persistence (they never seem to tire) are felt by Lucas and are as important to his progress to recovery as the other more clinical actions.

One afternoon, we threw Burke and Krista our of Room 638 and they took a much deserved hike.  We were left alone with Lucas and all of the machines and monitors.  At one point, lights flashed and alarms went off…and our own “unmonitored” vital signs went slightly haywire.  What was happening to Lucas?  Were we responsible?  Nothing and no were the answers; a temporary faulty connection was the culprit.  During this time, we could also put our hand on his bare chest and feel the effects of the ventilator and his own breaths, hold his head and work his arms and legs.  Mary Jo sang to him (though not very well).  Then we could appreciate Burke’s and Krista’s calm command and experience a small taste of the closeness and affection they feel.

When all is said and done, there remains Lucas at the center.  He struggles.  He improves slowly.  He graduates to milk and to a crib.  He gets prodded, poked x-rayed, MRIed and tested with a frequency that would drive us nuts.  He is getting prepared for another venture off the ventilator.  And, in spite of it all, he continues his rapid rise on the “cuteness” meter.  There is nothing that gives hope like cute.  Although not yet full-term, Lucas has also become a wise teacher.  He teaches us all again about the preciousness and precariousness of life, even one tiny beginning life.  For us this is all the more poignant with the contrast of a dear friend, whose long life is now drawing to a close.  Lucas reminds us that struggle, spirit and hope have an irresistible claim on our emotions and imagination; that to be human is to care; that to be family is to commit with devotion and love and nurturing.  As we watched Lucas and Krista and Burke, we found it impossible not to believe.

– Mary Jo and Michael