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.”

Donut Days

I woke up today feeling meh.  I just felt down; which I know is a reasonable thing to feel.  When we got the diagnosis of olighydramnios, I used to cry every day.  Going back to work was a good distraction so I’d have some days I wouldn’t cry.  Lately I go through most days coasting more or less- I have more days without tears than days with tears.  Work plays a big part because it’s forced me to pretend and numb myself up, which I think carries over to life outside of work.  But I still have my down days.

 

I still was able to get out of bed, pull myself together and head to 6:30am bootcamp.  I know myself and I need exercise.  It helps distract and clears my mind.  I also feel like a guilty blob when I don’t. So getting there wasn’t hard.  Working out wasn’t hard (or actually it was very hard physically, but mentally no problem).  And then I rushed off for a quick shower at my cousin’s before heading to work.  That’s when the meh feelings started to catch up.  I didn’t want to go to work.  I didn’t want to pretend. I didn’t want the stress that comes with working.  So I stopped and got me a donut.  Boston Cream.  I feel like I get more bang for my buck- the donut plus the ooey gooey goodness inside.  Plus there’s got to be some sort of dairy in that cream, which means I get calcium (if my midwife is reading, maybe she’ll agree?).  When I’m feeling down, I eat my feelings. I’m definitely not one of those people who lose their appetite (or weight) when they are depressed.  I personally would prefer the taste of chocolate in my mouth all the time, when I’m down.  It helps.

 

So on days where I’m feeling down, I eat a lot more chocolate, which often includes a donut.  Hence the new name- donut day.  I need a name for them because in general I am down anytime I think about my situation.  But some days- donut days- are the worse days.

 

I had an ultrasound today.  My midwife and I debated about going- we both knew that it wouldn’t necessarily tell me much new, wouldn’t change anything really.  It’s the midwife model to think about each intervention (like an ultrasound) and wonder how would this change my management.  Today’s ultrasound really wouldn’t, I don’t think.  But I shoved the midwife in me aside and went anyways.  Part of me just wanted a break from work.  Part of me wanted to see my baby again.  Part of me might just thinks maybe they’ll see more fluid.  Maybe they’ll tell me some good news.  Plus the doctor I was scheduled with, made me realize last time I saw him that I needed a more concrete plan.  So I was curious about his thoughts at this point.

 

Today we saw the doc with lots of experience- the one who gave us a little hope earlier saying the lungs don’t “look hypoplastic.”  Fluid today was undetectable.  Every other week we seem to find a little pocket so I get the label of oligohydramnios.  On weeks like this I have the label of anhydramnios.  Two different labels, but in my case no real difference.  Oligohydramnios is a spectrum and has different cutoffs depending on gestational age.  My oligohydramnios is considered severe and persistent.  Mild or borderline ologihydramnios would have different consequences.

 

So today I have anhydramnios. This to me is neither good news nor bad news- it’s all the same.  But they did see a small bladder!  Apparently they saw one last week, but I didn’t know that.  I almost cried tears of happiness. A small bladder means some urine is going through the kidneys.  It just raises my hopes that there might be some kidney function.  Nothing spectacular, but some cells must be working in there.  This is good news.  I asked the doctor his thoughts on the chest cavity.  When lungs “look hypoplastic” the heart just fills the rib cage.  In a normal chest cavity, the heart fills about 1/3 of the chest cavity.  He measured our baby’s heart vs chest and it fills about ½ the chest.  This is no surprise- it’s not a diagnosis of pulmonary hypoplasia, but it certainly raises suspicion for it.  This is not new news.  So in theory it’s neither good nor bad- we have been anticipating some degree of it since the fluid was low.

 

I left the ultrasound a little disappointed.  I guess there’s some good news regarding the bladder.  But what’s the use of kidneys if the lungs don’t work?  I suppose this will help me come to terms even more with the thought of my baby on a ventilator- whether it works or not.  But the disappointment made me realize that I actually do have a little bit of hope.  I often feel like I don’t- I feel like I write as if I don’t.  But instinctively I must have some hope somewhere in me in order to even experience disappointment.

 

I go to the hospital in a week.  It’s getting more real.  Earlier the idea of getting to 34 weeks was exciting.  And I’m a little excited to relinquish the burden- someone else will be looking after the baby and making the decisions.   I don’t have to worry so much about fetal movement because the monitor will be telling us what’s happening. But as 34 weeks approaches, I’m beginning to realize that there is an end to this.  This baby will be born.  I will no longer be pregnant.  There is no more hope or fear- just reality.  The baby will breathe or not breathe.   The baby kidneys will work or not work.  The unknown may be tortuous, but there is some comfort in it as well.  The unknown can sometimes be better than a known sadness.  So for now I am going to try to figure out how to “enjoy” this time of uncertainty.