Sunday, May 31, 2009

The New World

Somewhere in my mind I've decided that I have until C's 2nd birthday to finish constructing my new world. If I'm being generous with myself I'll add in the 12 extra days and make it the 2nd anniversary of R's death. The point is, however, that grief will likely be my constant companion for the rest of my life and I should figure out how to wear it comfortably.

I'm starting to think that the only way to cope with the memories I carry and revisit daily is to deposit them somewhere outside of myself. Chances are this blog will basically be an echo-chamber for my private musings but there's always the chance that someone will stop by--maybe someone who's just lost a parent or a child and needs to know that they aren't alone.

Grieving, remembering, moving all takes a tremendous amount of energy. The question is do you just let the heat build up inside until it's unbearable or do you direct the force outward and put it to work?

Saturday, May 30, 2009

How do you get to the angels?

Even two years after the fact (and almost 4 years since my Dad's death) I'm occasionally blindsided by a rogue wave of crushing grief.

Tonight I'm helping my Mom babysit my nieces, aka The Dynamic Duo. They're 4 and 6-years-old and open to new experience and information in the way that only young children can be.

Out of the blue the 4-year-old turned to me and said, "How did Pop-pop get to the angels?"

"He got sick and then he went to sleep and didn't wake up," I replied as the tiny pilot who steers me through these moments sprang into action.

"But how do you get to the angels? Where are they?" the 6-year-old pressed.

"I don't know. It's complicated."

"You disappear?" asked the 4-year-old.

"Sort of."

"M's Uncle Cookie died yesterday. Maybe he'll be friends with Pop-pop."

And after holding it together through job interviews, follow-up NICU visits, memorial services, baby showers, and so many other challenging events and conversations, the pilot was finally outmaneuvered by the storm.

I left before they could see me crying for R, Dad--for poor Uncle Cookie, struck down by leukemia in his early 30's. Uncle Cookie who called R's death a tragedy when he knew his own days were numbered.

Why do my beautiful, innocent nieces even have to think about the mechanics of reaching heaven? Why can't their sad excuse for an aunt believe that heaven exists?

Friday, May 29, 2009

What Happened?

I don't spend much time talking about the girls. For the most part, the people who need to know have already heard the details. As a courtesy to anyone who happens by, however, I'll fill in the backstory.

R and C were spontaneous monochorionic, diamniotic twins. In other, words, identical. We have no idea why our little zygote split into two separate beings (though I may share some theories later on). It's not genetic, we did not employ any fertility treatments or mysterious rituals.

The pregnancy progressed smoothly until around 28 weeks when C (then known as Baby B) developed a condition called no-end diastolic flow which led to intrauterine growth restriction (IUGR). We found out later that these problems were a result of twin-to-twin transfusion syndrome (TTTS). Without getting overly technical, identical twins typically share a placenta and frequently develop malformed blood vessels that result in unequal distribution of blood flow and resources. Simply put, C was starving and R was getting overfed.

I was hospitalized during the 29th week of my pregnancy and spent 11 days with 24-hour fetal heart monitoring. Although C showed some progress during the next couple of weeks, she was still in danger and the doctors suggested that we opt for a planned c-section at 32 weeks. My husband, T, and I reviewed the information they provided about premature birth and decided that the benefits of an early delivery outweighed the risks. The doctors scheduled the appointment and the girls were delivered during an uneventful surgery on August 14 and moved into adjoining rooms in the NICU.

We had two days of relative relaxation with our perfect, tiny girls. Two days of believing that we pulled the wool over death's eyes. And then lightning struck.

I have a vague recollection of the cardiologist appearing in R's room and explaining critical pulmonary valve stenosis and balloon catheterization. The there was something about a fortunate case of PDA keeping R's blood flowing and a prostoglandin drip and a race to reach 5 pounds so that the doctors could operate. Then a whole bunch of tubes, wires, alarms, and updates.

On the morning of August 24 I arrived at the NICU to find C sleeping peacefully while R tossed about. The nurse suspected infection and my heart sank. The cultures wouldn't be ready for 48 hours but they suspected necrotizing enterocolitis (NEC).

I don't need to explain NEC here--there are plenty of descriptions on the internet and each one will make your blood run cold.

Within hours we were on our way to another hospital, miles from C, R on a vent in an ambulance.

Two days later it was over. Exploratory surgery confirmed the doctors' worst suspicions. NEC had completely destroyed R's intestines and stomach.

We unhooked the vent around 4PM on August 26th and waited for her tiny heart to stop beating. The nurse cried. The surgeon apologized. We told R she could finally rest.

Then we signed the necessary papers, collected our memory box, and dashed back to little C, terrified of what might happen next.

One week later we hugged all of our nurses and doctors good-bye, packed the 3.5 pound C into her carseat and headed home to figure out how to live with sorrow and joy.