A kidney ultrasound

The cold gel on my side felt like appropriate payback for the daily cold gel torture I impose on my patients as I search for fetal heart rates. The cold gel on my side was looking for something different. The sonographer scanned my kidneys looking for cysts.

“So it says you have a family history of multicystic kidneys?” she questioned. “Who’s had them?”

“My daughter.”

“Oh, no one else? Did they trace them back to anyone else in the family?”

“Well, she had Down Syndrome, so it’s possible it could been from that. But no one else in the family.”

I had been putting off this ultrasound. Mabel had multicystic kidneys, which we generally attributed to the Down Syndrome, but in theory could have had other origins. It can also be spontaneous or have a hereditary component. Children who are diagnosed with multicystic dysplastic kidney disease (MCDK) often have a parent who turns out to have the disease as well, albeit undiagnosed. When parents have the condition, there is a chance they can pass it on to their children.

So, I was encouraged to get my kidneys checked- for my own health and to see about any risk of recurrence in future pregnancies. I hemmed and hawed about it. It was easy just to chalk Mabel’s kidneys up to the Down Syndrome (kidney issues are more common in children with DS than the general population). I wasn’t sure I wanted to know. I figured (naively) that I was healthy. I’ve never even had a UTI. And if I did have MCDK then it would be yet another thing I would worry about in future pregnancies, but something that wouldn’t be diagnosable until mid pregnancy anyways. And it wouldn’t change my management- the golden question in my field. If a test wouldn’t change the management, then why do it? Do I want the additional worry of an increased of kidney disease, oligohydramnios, poor prognosis and neonatal death, when there is nothing I could do about it?  .  Ultimately I decided it’s important to know for my own health. I want to be healthy for subsequent pregnancies.

“No cysts,” she said as she scanned my right. “And none here either,” as she finished up on my left.

I would be lying if I said I wasn’t relieved. I’m not sure whether the sonographer saw the lone tear that I let escape.

I visited the hospital

“I’m going to get three dozen,” I said to Chris as we drove to our favorite donut place. “It’s going to be a little pricey, but it’s for the people who took care of our baby.” He nodded in agreement.

We were on our way to the hospital, my first time back since Mabel. Each month after her death I had something big to do. March I had to be home by myself. April I was supposed to go back to work (I didn’t). May was mother’s day and the birth of two new babies in my family. June I actually went back to work. July I started seeing prenatal patients and saw my newly born nephew for the first time. Now it was August and my plan was to go to the hospital, to simply be there. To sit in each of the rooms I was with her- the room I was pregnant in, the room I labored in, the room I birthed her in, the room she lived in and the room she died in. Step one for getting back to being a full scope midwife.

I told Chris on the ride in that I was nervous. He patted my thigh, as he usually does when he’s trying to reassure me. “I’m nervous about how I’ll feel- sad, angry. But I’m also nervous that I won’t cry.” I felt like I was setting the stage for how things were supposed to be. I’m supposed to go to the hospital and feel all sad, have a good cry and then the scariness of the building would melt away and all would be well. But I’ve learned that there is no set way to grieve, so I didn’t know how I would react. I was afraid that if I didn’t cry people would think I’m better- I’m over her.

As we approached the hospital, I felt shaky, as the familiar tightness in my chest that I have come to know as anxiety, took hold. Slow breaths and Chris’s warm hand on mine, helped calm me. My ID wouldn’t let me into my normal parking garage, so I had to ask the car behind me to back up so I could do the same. The embarrassment acted as a little distraction as I found a spot on the street. We entered the children’s hospital through a large revolving door and I noticed a decoration at the center- a bunny made out of grass and two carrots laying next to it. Had I been able to park in my normal garage, we would have missed this display all together, going in a separate entrance. I took this as a good sign.

The Carrots in the revolving door

The Carrots in the revolving door

When the elevator doors opened on the fourth floor, I stepped into the hallway. I froze, unable to go forward and so I surrendered myself to my tears. When I finally was ready to go on, we passed professional photos on the wall of smiling children- all successful graduates of the NICU. Under their faces, was listed their gestational age and reason for needing intensive care. Brian- 27 weeks- omphalocele. Mara, Jenna and Samuel- 32 weeks- triplets. There was no photo of Mabel- 36 weeks- Down Syndrome, dysplastic kidneys and pulmonary hypoplasia.

I swiped into the Labor & Birth unit and passed more photos, this time of pregnant women and smiling babies. I remembered sitting in the charting room when I was 24 weeks pregnant. Another doctor was commenting to me about those photos, which were a new addition to the floor. “You know, we are a high risk hospital and many of our babies end up in the NICU. It’s not a good representation of our population, all these healthy, normal looking babies.” I was nodding in agreement, when her face froze, realizing what she had done. “Oh, I am so sorry. I wasn’t even thinking of you.” She knew my baby had Down Syndrome. I appreciated her honesty.

I walked by the photos, thinking again how Mabel’s face was absent. There wasn’t even a face like hers. As I approached the front desk, I was greeted with smiles from some of the nurses. One gave me a big hug and said “It’s going to be ok. It’s going to be good.” More tears found there way out. I embraced another nurse and thanked her for the cards she had sent. I had received countless cards after Mabel died, but she had been one of the few people to send a card when Mabel was diagnosed with low fluid. Once hugs were exchanged, I said “I brought donuts,” which brought laughter to the group.

After relinquishing one of the dozens of donuts, we headed to 469- my labor room. We closed the door and I burst into tears. The last time I had been in this room, Mabel was alive. I cried looking at the bed I knelt on through my contractions. I cried looking at the shower I tried in an attempt to ease the pains of labor. I looked at the infant warmer and imagined all the babies I had placed on it in the past. I tried to imagine doing it again- being a midwife in this room, hearing the satisfying cries of new life, helping a couple become a family. I cried at the thought of holding babies and being part of these happy moments. I cried at the thought of helping people have what I didn’t. “I hate it here,” I said to Chris. I pulled up the youtube video I had made and we started watching it on my phone. I wanted to remember some of the good things. As we watched, my tears dried up and we heard knocks on the door. One of the midwives I work with, one of my labor nurses for Mabel and one of my midwives joined us. They gathered around me and watched the rest of the video. I could hear sniffles and soon a box of tissues was found. I remained dry-eyed. The video makes me happy, though it makes others sad.

My labor room

My labor room

When it was done, I was ready to move on to the NICU. My midwife had checked to see if Caroline’s room was free. It’s the space families can use when they need a place for privacy. “It’s not always used for bad news,” the neonatologist had told us on the tour, when I had asked him where can we go if our baby is dying. Today the room had a sign taped to the front, saying “reserved for the XX family.” My midwife had checked and we could use it for a few moments while the family was out. I wondered what bad news the XX family was dealing with today.

The furniture had been rearranged. The space was small, 6 x 10 feet maybe and it had just enough room for a small couch and two chairs. Today the couch and chairs were reversed, each occupying the space the other had been in when we were there with Mabel. I didn’t like it, the furniture rearrangement, and I said so. Chris and I sat on the couch; it was the couch were we held Mabel as she died, the couch where I put her on my lap so I could see all of her for the first time.

Caroline's room

Caroline’s room

“I don’t feel her here,” I said.

“I can, a little,” Chris replied.

“I don’t.”

But I then went on to tell my midwife about the bunny and carrots in the revolving door. We talked about how my ID didn’t work and she said I can’t take it as a sign that I shouldn’t be back. She had a problem with hers not so long ago. That brought us into a conversation about work and me being back delivering babies. It’s a conversation I don’t like and I got a little upset, so it didn’t last long.

Not wanting to take any more time away from the XX family, we left Caroline’s room and found the charting room to drop off our second dozen. The elevators then took us to the maternal special care floor. Three nurses were working there, two of them had cared for me while I was in house. I dropped off the remaining dozen donuts and headed to 1038, my room on the floor.

This was the place I was happiest in pregnancy. Once I was admitted and survived my first twenty-four hours, I realized that my baby was likely going to born alive. She was safe here- monitoring all the time and the burden of worrying about her well being wasn’t mine. The room looked more spacious, without the weeks worth of belongings I had brought with me and without the cot they had brought in for Chris. Their was an empty plastic basinet against the wall, waiting to be filled by a new baby. My baby never saw a basinet like that one. She only knew the warmth of a NICU isolette and the warmth of my skin.

my maternal special care room.  I was happiest here.

my maternal special care room. I was happiest here.

I looked out the window and noted how it looks different in the summer. My last view from the point showed streets covered in snow. My midwife joined us as we were looking outside. She mentioned how in the parking lot below us she had recently seen a jazz band at the farmer’s market that sets up there on Saturdays. The parking lot was outside the city’s mental hospital and Chris commented on how it was an odd place for a farmer’s market. “Look at that sign!” I pointed to a white banner hung up on the wall of the mental hospital that lined the parking lot. It advertised the farmer’s market and had a picture of carrots on it. There she was again. I still couldn’t feel her there, but she was making herself known.

If you look closely, you can see carrots on the left side of the white sign on the building.

If you look closely, you can see carrots on the left side of the white sign on the building.

As we left the hospital, the elevator doors opened onto the third floor. Thinking it was my stop, I started to step out. I paused realizing quickly I was getting off prematurely, when I almost bumped into a young woman, a teenager in fact, crying right there in front of the doors. She saw us and walked away. A hour before, I was her. A woman standing in front of the elevator doors, delaying my journey to retrace the last days of my daughter. I had cried tears for the baby I had lost and the memories I was about to face. I saw her crying on the third floor- I’m unsure what kind of floor it is- and wondered whom she was crying for. I turned to Chris and said, “I’m not the only one who cries by the elevators.”