I’m a little shell-shocked right now. I’ve just come from the NICU, from a meeting of the “Partnership Council,” a non-descript name for a group of medical staff and the occasional parent (me) that makes decisions on all NICU matters aside from specific medical decisions and union issues. It’s a big deal. They’re even getting a badge for me.
I hardly recognize the inside of the hospital’s front entry. I know that I’m in the right place only because I know the front desk security guard. There are walls where there used to be open space and huge shiny bronze-y colored pillars where there used to be walls. They are remodeling. It’ll take another two years.
Looking at the huge pillars, a cynical “so that’s where my two million dollars went”* comes and goes through my brain before I can stop it.
* that was the total hospital bill for both boys, but that’s not what the insurance paid. Their negotiated share was less than 10%. I still can’t believe that there’s an actual debate about reforming health insurance. But that’s a post for another day.
Is it right for a hospital to look so flashy?
That’s another thought to squash. After decades of mistrusting hospitals and doubting doctors, eschewing them for yoga and leafy vegetables, I am on the other side now. My boys owe their lives to this hospital, these doctors, and the miracles of expensive western medicine. I am one of them, now. Out of solidarity and loyalty, I must love these pillars.
I greet the rest of the security guards by name. The 4th floor guard, the NICU guard, the one in the elevator coming back from her break.
Today the council is discussing the new discharge pamphlet (which happens to feature a picture of the twins—our twins—on the cover). We discuss the wording, what changes need to be made to the Mandarin and Spanish versions, who still needs to sign-off (I’ve already given my seal of approval), when they’ll go to the printer’s.
At the meeting I know everyone except one nurse. They all know me.
Then we discuss the new NICU website that is in the process of being revamped. I am in charge of taking notes for the group. The photos of moms and babies on the new site are actual former patients. I know all of them. They all know me.
We discuss possibilities, menu navigations, submenu items, the ordering of such items. For instance, we all agree that “Birth Defects” shouldn’t be the first item under “About Your Premature Infant.”
Then we get to the section of the site that discusses medical conditions: RDS, ROP, PDA, NEC, PHV, all acronyms with which I am already familiar. The acronyms are misleading. They look so benign when reduced to three letters, but they are anything but. RDS is a dangerous respiratory virus (the boys will get 12 immunizations apiece over the next two years to protect them against this virus). ROP refers to the arteries of the eyes that get blown out from too much oxygen (this is why Stevie Wonder, another NICU grad, is blind, btw). PDA is the heart valve surgery that both boys underwent. NEC refers to the condition of an underdeveloped digestive system. Last week a woman stopped me in the street to tell me about her twins (now twelve years old) who were born at 30 weeks. The girl was fine ,but her boy had NEC.
I feel my heart in my throat. I am remembering.
Now I know why so many intelligent, grateful, generous NICU moms refuse to be a part of the partnership council.
At one point I give my opinion: “We need the ‘what to expect’ section to reflect some of the things that parents can actually do while they’re in the nursery,” I gesture toward the website projected on the wall. “All the things I did when I was here, every day for so many days—none of that is reflected in what we’ve seen so far.”
I see nodding. A note is made. I get “volun-told.”* I am now in charge of this section of the site.
* new term coined by one of the nurse’s teenagers. It means volunteering for something that you are told to do.
We get to the statistics. For 23 weeks. 24 weeks. 25 weeks. 40% of babies born at 25 weeks have notable cognitive delays and physical disabilities that are detectable at age nineteen. For now we will use the national statistics although Alta Bates’ numbers are better than the national average.
I am choking on my heart. I don’t feel like one of them anymore. I feel like a mom suddenly realizing that if this were Vegas, she would have walked away from the tables rather than play.
After the meeting I go to the NICU to “make my rounds.” I’m looking for one mom in particular. (“Tread lightly,” I am advised.) The last time I talked to this mother she hung up on me. She’s in her son’s room. I know her nurse; the nurse knows me.
The mom has just finished pumping. She vaguely remembers talking to me. Details about my kids round out my profile. She remembers everything about them. The three-year old, the twenty-five week twins. She’s very “with-it” today. Makeup, nice clothes, strong voice. Her baby’s going to be fine, she says.
She’s right. Her baby looked great, over five pounds I resist the urge to evaluate him by his numbers on the monitor.
I congratulate her.
“He looks so peaceful,” I offer. I don’t know why, but I want to cry for her.
She thinks I should talk to the mom in Room 14. That mom has a baby like mine. It sounds like a dismissal. We don’t shake hands (unspoken NICU rules) but I do squeeze her arm when I leave.
I don’t go to Room 14. Not today.
© 2010 Janine Kovac
© 2010 Janine Kovac