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Learning and trying to be kind and living my life as fully as I can stand it.

Sunday, April 26, 2015

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.

Wednesday, April 8, 2015

Scale of 1-10

My grandmother died when I was eighteen. She was and still is one of the people I love the most in the world and when she died it was Christmas vacation of my first year of college. I had just spent the most homesick few months of my life and all I wanted was to get home and see my friends. After she died I walked around feeling like someone had chopped off my arm, dimly wondering why everyone was still treating me as though everything was ok. Couldn't they see I was missing an arm?

My mom and my sister went to a grief support group in San Francisco--I was back in Boston for school, I'm not sure why my brother didn't go with them. I didn't hear much about the group though I know it was very helpful for them. I do remember them telling me about how other people in the group would talk about the death of a dog or something else that seemed less important, less painful. The facilitator taught the group that grief is grief. It's not comparable--my grief is worse and sadder than yours. I've thought of this often since then.

After my liver transplant people would stop themselves whiling complaining to me about something and say "Oh, I can't even complain. This is nothing compared to what you've gone through."

I would reply that yes, of course they could complain. My getting sick did not close the door on all other future suffering and complaining. When you're in it, feeling the pain of whatever is hurting at the moment, that is as real as it gets. All of that and yes, there were times when I'd want to shout Are you kidding me with this?? THIS is the problem? Shake it off homie.

All of that and I'm one of the few who got the transplant. Lots of people don't get that lucky. Who am I to complain?

In the hospital the nurses ask you "On a scale of 1-10 how much pain are you in?" The pictures show a row of faces--the ten has stenciled tears running down its cheeks, the one is smiling. I'd be half-focused on my pain and half-wondering "Well hmm, how bad IS my pain? I bet 'x' would hurt more than this. . ."

How do we respond to the pain and suffering of others? Some people force you to look at the positive--yes, but look at how great it is that you HAVE four healthy children. You are so blessed. Some people bring up something worse, to try to help you have perspective--you aren't going to eat that food? There are children starving in Africa who would love to eat that steamed spinach! Some people--the ones who have the energy and the awareness or the training or the natural leanings or whatever else goes into it--sit there and make space for you and what you're feeling. They don't judge or Polly Anna you. They sit with you in your grief and your discomfort and let you know that you are not alone. Which is probably what most of us want--that person and to know that we're not alone.

As a patient, when I finish reeling off all of the shit in my medical chart to a new practitioner, more often than not I am met with a blank stare. Whoa. Just. Whoa. That is a lot. Ulcerative colitis at eleven. Infertility at sixteen. Liver failure at twenty-three. IVF at thirty-five. A premature twin pregnancy with eight weeks in the NICU at thirty-six. A spontaneous twin pregnancy at thirty-seven. Holy shit woman.

As a parent, I am often met with a similar blank stare. From strangers at the park who yell out to me as I pass "We've heard about you!! We haven't met you but we've heard about you and all the kids. How old are they again?" From other twin parents who look at me practically with tears in their eyes as they send a quick prayer up to whoever they believe in, asking that they please, please do not get pregnant with another set of twins. I often have people say things like "Oh man, you make me feel like an asshole for ever complaining. I only have one! How do you do it?" or "I can't complain to you! I don't know how you do it."

And I respond with "Parenting is hard no matter what. I think your kids know just how much energy you have to give. . .and they push you past that and take more." I've never had one kid--I have no idea how hard it is. I'd imagine that going from no kids to any kids is hard as hell--I know it was for us. My husband looked at me after we'd had the older twins home for a month or so, haggard, and said "People lied! No one told us how hard this is." It's hard. Does it matter who has it harder? Also, how insufferable would I be if I trumped everyone else's complaints? You think that's hard? Try this on for size! I'd be left alone, searching for that other mom of two sets of twins to come listen and share complaints.

I am so incredibly lucky. These beautiful, healthy, lively children call me mama. Or at least look at me with smiles that say "Oh hey, mama" until they're able to say the words. I get attention and often admiration everywhere I go. That can feel good. I don't even have to do anything other than survive to have people think I'm cool. I would not trade one thing in my life. The transplant saved my life and changed it forever and I would never go back and undo any of it, even if I could. The years of infertility and being told I would never have kids sliced my heart open over and over. I got through that. I wouldn't want to go through it again but it made me who I am as a mother and as a woman. There were many times I held back tears in the face of the joy of people sharing the news of a pregnancy with me. I know how lucky I am.

All of that is true and yet. It is 9:26 in the morning. I'm sitting here writing, trying to ignore the cries of one child is is wailing "Mama! Mama!" in a heartbroken voice. I have already watched as that same child rubbed peanut butter into her hair, not once but twice--the second time looking me straight in the eye with a "What are you going to do about it?" look in her eyes. I held her head over the sink and washed it out as she cried. I scared her and I feel ashamed of myself.

I sometimes think my mere existence can make other mothers feel like failures. How did she get all four of those kids into the car to drive into the city? That's a good question. How the hell did I do that? It is ridiculously fucking hard. I do it by pushing calm into every edge of myself so that I have the space to try and acknowledge four separate little people and each of their needs. It is hard and I fail, over and over again. No amount of acknowledgement or comparison or kudos make it less hard. And the really really hard times when I wonder how I will make it through the next five minutes usually happen when I'm alone, unseen. Those aren't the stories that I call up when I meet an expectant mom of twins. I'm not going to tell her "Holy shit it is so hard! Watch out!" What would be the point of that? Plus, I mostly forget the details when we've passed through them. PTSD maybe or mom brain. Or just having no space to recall them or dwell on them.
I joke that the key to it all is having low expectations. Or I say that I let my kids eat sticks and don't brush their hair and let them fall and hurt themselves. All true.

Is it harder than what you're doing? Who knows. Who cares? Does it matter?

Thursday, April 2, 2015


Those who know me or us know that Cyrus is fine. It was scary in the beginning--very scary. A week or nine days after the birth of these twins the doctors told us they would be taking him down to get a CT of his brain. His birth was very traumatic and his blood pressure was low for a while. Very low. The kind of low that makes doctors worry about the hit his brain took.

In those days he didn't move. He was hooked up to so many machines, his head turned to the left all day, every day. No one held my boy for the first week or more of his life. I hate that so much. My arms ached to hold him but more than that I just wanted, needed, for him to be held. Loved. By someone, anyone, it didn't have to be me. What did it feel like to be born and then put into a box and left there?

The day before the scan our favorite doctor talked to us on rounds. "Have you discussed what the results of this scan might mean?" she asked gravely.


We decided not to discuss it. I think we decided that together, my husband and I. I should ask him to see how he remembers it.

The doctors were very serious that day. They didn't like that he wasn't moving, wasn't showing signs of life. I felt him in there, in his body. Felt his life when I touched him. But then I'd worry that maybe I just wanted him so badly that I was fooling myself.

I called my mom early the day of the scan and asked her to bring Bill, her sweetheart, to see us. Bill is an artist--a sculptor and a painter and a calligrapher. He is a gentleman and a gentle man. When I was sick with liver failure he would lay his hands on me, on my feet or my head, and reiki me. He sent healing energy into my sick body. Later, after I was better, he wrote me a beautiful letter about what a powerful experience it was for him to be alongside me throughout that experience because even when I was so sick, not moving or opening my eyes or talking, he felt me in there. My strong self, inside my sick body.

He and my mom came, early in the morning, Bill dressed up in a navy, wool blazer and carrying a brown paper-wrapped frame of his work. He had somewhere to be for work soon but he came anyway and put his big hands on my little boy. I wanted his healing energy but more than that I wanted someone other than me to touch him and know whether he was in there or not. I didn't ask him what he felt and he didn't tell me.

Later that morning they took Cyrus down, a team of people walking beside his little covered bed. Tubes and machines everywhere. My baby would be taken out of his incubator and put into the scanner, not even needing any sedation because he was so still. We waited upstairs for him.

For some reason I think we waited a day for the results, though that doesn't make much sense. It wouldn't take that long. I'm probably confused but what I know is that I spent a lonely, terrified night laying awake in my hospital bed, no longer a patient myself, praying and praying that these people wouldn't tell us that our son was not able to breathe on his own and would need to be disconnected from the ventilator. Was it the night before the CT? Or the night after? I don't know. I wasn't alone--my husband was asleep on his cot next to me. I didn't wake him--I didn't want company or conversation. I cried and cried as terror and grief seeped out of me.

I also wasn't alone because I had put an update on Facebook earlier in the day, asking for prayers and energy for our little lion. Why was he a lion? I think because my friend had given us two stuffed animals after our babies were born--a lion and a crocodile. For some reason they'd become stand-ins for the babies for me. I held that soft, stuffed lion, wrapped in sharp hospital sheets, and read through people's well wishes. Over and over again. A friend from another life, someone I met through an old love, wrote "Laser beams of positivity" and that was the image I held in my head. My son surrounded by love, by light, by laser beams. Please be ok, please be ok, please be ok.

The CT scan showed some bleeding in his brain. Grade I intracranial hemorrhage as well as some other little bleeds. They couldn't tell us what that might mean for him in the future.

My husband had his hard day and night after those results. I was so relieved it was like my whole body had been drained of feeling and was left as a numb vibration. Anything would be ok, could be dealt with, now that I knew he would live.

He started getting better that day.