On "Getting It"

I rarely write about my job.  It's not that there isn't a plethora of material there.  Many times my work environment can put the 'D' in drama.  I just feel that this space is more about my parental journey rather than my professional one.  However, there are times when I become acutely aware of the bi-directional influence the personal and professional have on each other, and I guess this is one of those times.

Yesterday, my primary went home.

To clarify, a "primary" refers to a patient... in our case, a baby... with whom a nurse makes a commitment to work with throughout the patient's stay.  In essence, you are assigned that patient every time you work.  Now, in many places within a hospital, there is no need for such an arrangement.  Most hospital stays are meant to be short term and brief.  Indeed, insurance prefers it that way.  But the NICU is different.  Our babies will stay with us for weeks, often months at a time.  For many babies, this stay is marked with extreme critical needs and an ever-increasing series of complications.  Primary nursing is meant to give our babies some nurses that can provide consistency, an ability to maintain an 'arc of the story', and a means from which parents and other family members can develop a meaningful relationship with at least one consistent face.  Additionally, primary nurses tend to become strong advocates for both the patient and the family. Many times, a primary nurse becomes the patient's voice in a complex world.

We take it pretty seriously. 

I like to take primary patients, although I am not always willing to do so.  It is a major commitment.  You have to be willing to stay with that patient through discharge.  You have to be willing and able to work with the family.  You have to commit to whatever happens with that patient, and it can range from beautiful to tragic, sometimes in the same week.  So whenever I do take a primary patient, it is usually after a lot of thought and contemplation. 

Or, in the case of Baby F, I decided during my first 12 hours shift with him (I admitted him).  Sometimes you just gotta jump into the deep end of the pool, ya know?

Baby F was a micropremie, the smallest of the small and youngest of the young.  To give you some perspective, Baby F was born under 500 grams.  The can of Chunky Chicken Noodle soup next to me is 527 grams.  Yeah, that is small.  And he was young (gestationally speaking), skirting the edge of viability.  One third of babies born at his gestation today do not make it to discharge.  And of the ones that do, they often have major medical complications.  To primary a baby like F is setting yourself up for a long term gig.   And it was... Baby F stayed with us over 100 days.

But then, I got to have yesterday.  I got to see him leave with his loving parents, on minimal medical assistance and as far as we can tell today, his future looks very bright.  And I got to be a part of that.  I will, forever and ever, be a part of that family's story.  Years and years will pass, and he will grow up and be who he will be, and at major milestones (graduations, weddings, etc), I will be in some small way remembered.  I will be remembered as I remember exactly who came to J-man's delivery from our NICU (Miss L and Miss K), even though they were only there for 6 minutes... okay, maybe 7... as I remember every person who has worked with him, who has had some impact on our lives. They are a part of our story.  It makes me ever more aware of my responsibility and duty to these families.

I think being J-man's mom has made me ever more sensitive to the impact that I have on families.  I think I "get it" more than I did before.  Sometimes, that just means I know that I don't "get it" at all.  I judge a little less, have a little more compassion, and understand at least in some way the crushing weight that this experience can be for a family.  I am not sure that I could have gotten here without J-man...  I think one believes that they "know" what it is like or what they would do if it was them in that situation, but they don't  You never do.  You just can't. You just need to go through it to even begin to truly "get it". 

My Open Letter featured on The Thinking Person's Guide to Autism has gotten some amazing... I mean AMAZING... responses.  Two school districts from opposite ends of the country wanted to use it for teacher training. A hospital in Canada the same.  I have had many people repost, many emails of appreciation, and I have been a little shocked and deeply honored.  But as I look back, while I did write it as a parent of a special needs child, I think I also wrote it as a professional.  It was as much a letter to my old self, "pre-Jman", who maybe didn't quite appreciate my role in these families stories.  I didn't understand them.

But I think I "get it" now.

I hope I do.  Or at least I am trying harder.