NICU, part something of several

The metaphor I've used for the way my liver transplant impacted my life describes a big bear ambling along and swiping me from his path--a flying, sudden change that took me from one life onto another. That image does not match my life experience over the past few years but more and more it seems necessary to find the words that do. I am. . .struggling. The blues. Lonely and feeling alone. Wanting so much to find an action to make myself feel better--a fix. Knowing in my mind that there is no fix. Is something even wrong? I can't tell. I'm in the thick of it--putting one foot in front of the other and feeling that, although that isn't enough, it's all there is.

Several weeks ago a friend of mine gave birth to her first son, very prematurely. She did an amazing thing--kept him safe and growing long enough for him to be born into the world and survive. Thrive, even. They're still in their NICU journey and though I imagined that I'd be someone to show up and help out. . .I've only talked to her once and haven't visited at all. It took me a week or so after his birth to put down the load I hadn't noticed I was carrying. Oh, I thought. This isn't my experience. I don't need to go there and tell her what to expect or find the right words to reassure them. I lived through this already and this is not me. Instead I planned to write a post about the NICU--what we learned, what we'd tell someone going through it. Before those words could come though I needed to tell Cyrus' story--a story I had been planning to write down in his journal, for him first. That didn't happen so it came out on the blog. Several people responded to me about those stories. The ones that meant the most to me came from my other NICU mamas--four ladies I know from the time we spent with Lily and Cyrus in the hospital.

Thank you.

I can't believe I didn't know that story.

I haven't written our story down yet. . .this pushes me to do it.

I'm crying. I cried. This made me cry. I'm crying.

They all said that. They cried because each one of them spent similar weeks and months at their babies' bedsides. Now we all have healthy toddlers and we're worried about how to brush their teeth rather than how often the monitors shriek to tell us they've momentarily stopped breathing.

Our first NICU was an open one. That means many of us were in the same big room rather than in private rooms like we had in our second NICU. Along with every other aspect of the experiences, it was interesting to be a consumer of NICU experiences, myself with a background in healthcare management and decision-making. How many times had I made a decision, thinking I was using the best information to create a better situation, but losing something vital in the process? On the surface I think most people would prefer a private room to an open NICU--with so much going on, so much emotion, so much out of your control, it can be nice to pull a curtain and close yourself off from everyone else.

An open NICU in the era of HIPAA (Health Insurance Portability and Accountability Act) is an other-worldly experience. HIPAA is responsible for the privacy paperwork I as a patient, and now the parent of patients, have signed approximately one billion times. Every time you go to a doctor's office for the first time you sign a paper saying you understand that they can't share your health information.

In an open NICU you are several feet away from another family--usually from a few families. You see them out of the corner of your eye. You hear them, talking to their babies, talking to their nurses, but you don't react because you are not meant to be listening. You know the names of their babies because the nurses make cute signs to hang on the front of the incubators. You don't know what the babies look like because you aren't supposed to look at them.You don't talk to the other parents, even when you might want to. You compare your babies against their babies--who is breathing better or eating better. You cheer them on, these other tiny babies, even as you feel the frustration and jealousy at hearing they might be getting out tomorrow when your son is still not eating. You create the illusion of privacy, even as you bump up against one another. It was only after doing it again in a different setting, with our own private room and absolute silence except for the beeping of our own babies, that I realized how glad I was that we had the open NICU experience first. To baptize us.

There was a tiny pumping room in the main NICU. To get there you walked past the front desk, past the first set of sinks, past four or five babies, into a dark hallway lined with laundry and into a small room with a couch and two chairs. A microwave where you sterilized your pump pieces in a special plastic bag. A ticking clock hanging on the wall that you watched as the twenty-minutes ran down. Stacks of magazines that you read through faster than you intended--a mix of women's issues and mom issues. The same Top 40 radio station playing over and over again, day or night. A sink. Stacks of bottles wrapped up in sterilized packaging. The pump room is where I met the other mamas.

The pump room was also the first place I felt mom competition--didn't take long for that to kick in. It was hard not to feel like a failure when the mom next to me produced so much more milk than I did. That other mom looked so cute, put together with make-up and thin already. I might have brought out similar feelings in some of them, for who knows what reasons. It learned quickly that I had to shut that shit down in myself--I couldn't drown  in the inadequacy of my milk production, kicking my own ass for not waking up often enough during the night to sit alone in my dark hospital room pumping for my tiny babies.

I spent many hours alone in the pump room but I looked forward to hearing the door open and seeing another mama come in. Sometimes we talked, often we did not. Sometimes I eavesdropped on a conversation between two others; sometimes I was the one talking and being eavesdropped upon. I saw a couple other women hit their breaking points. . or one of several breaking points. Whether it was a not-helpful nurse, a setback with the kids, a change in expectations, adjusting to a new doctor with a different style or just the overall exhaustion and overwhelm of being a parent who doesn't get to be the one who takes care of your own kid. We bore witness for one another.

Yesterday I walked six miles with my four kids for the March of Dimes fundraiser. With us walked Stephanie my friend and the world's best baby-sitter, along with her two daughters, her friend and her older daughter's boyfriend. We met up with two of the families I know from the NICU. Last year a group of them did the walk and I really wanted to be there with all of them but a bad cold, another twin pregnancy and my sister-in-law's bachelorette kept me from walking. I was determined to walk with them this year.

"Walking together" with four double strollers, six toddlers, seven adults, two teenagers and a ten-year-old looks more like folding in, around, behind, and on top of ourselves like a confused snake. Luckily it was a straight course so, even after separating, we'd all manage to meet up again, talk for awhile, admire the children.

How bizarre and amazing to realize that I'd only seen each one of these other mamas twice out of the hospital. And that the two of them hadn't even met while in the NICU--they met afterwards in a mama yoga class and made the connection that they'd overlapped in the hospital. Most of us are Facebook friends and most of us got together once last year for a holiday cookie party. We email from time to time. We like each other's pictures And we are somehow forever bonded because of that alternate universe in which we met or almost met.

Many of the walkers yesterday wore shirts In Memory of a baby who didn't live long. At the end of the walk we came to a huge, bright purple inflated arch with white lettering proclaiming FINISH. We proudly walked under it, having long lost track of our NICU friends. Cyrus pointed at all the photos decorating the arch, saying "Baby. Baby." Yes, those are babies, I told him.

Because this walk is for babies like you who were so teeny, tiny when you were born. But now you're big and strong.