The Story of Emily, Chapter 5: Life Goes On

The Story of Emily

Chapter 5: Life Goes On

Mark and I are homebodies and we always spent the weekends together decompressing from the previous week. The weekend after we learned something was wrong with the baby, our time together was vital. We talked about everything that had happened, replaying it from beginning to end. We were both hopeful that the next ultrasound would be more positive. If the ventricles in Baby Girl’s brain didn’t increase in size, maybe our life could return to normal. The chances were slim to none that would happen, but we needed to wish for something. Most of all, we spent that weekend holding each other.

Despite everything that had happened, we still had to return to our regular routine. I think it was probably easier for Mark to go back to work than it was for me. That’s how he gets through things—working. I would have welcomed the distraction of work too, if it hadn’t been for where I worked. I knew going back and seeing kids with the same issues my daughter might have would be complicated enough. Added to it, I also had to see eight pregnant co-workers, women with normal, healthy pregnancies. What I really wanted to do was avoid everyone until after the baby was born. Since that wasn’t possible and I am a responsible person, I went to work.

Time seemed to move in fast forward until our next ultrasound. All too soon we were back at the hospital waiting to hear the verdict. The news was not encouraging. Not only had the ventricles not stayed the same size, they had increased. One millimeter at time our baby’s future was becoming more precarious. The doctor (not the evil Dr. X) asked if we had considered the amniocentesis. Mark and I had done research on the procedure and learned that a very small percent of cases ended in a miscarriage or pre-term labor. We already felt she was in enough danger and we didn’t want to play the odds. For that reason, we declined.

After the ultrasound, we headed down the hall for our genetic counseling appointment. Mark’s mom, Jean, had come with us that day. She was there to support us, but also to fill the gaps in Mark’s family history. I had talked to my own mom recently to refresh my memory of my family. Genetic counseling takes a l-o-n-g time. We didn’t just discuss our immediate families. We had to think of anyone on either side that may or may not have had a genetic condition. It was a very serious and intense two hours. The only light moment came when Mark mentioned that he and his mom have psoriasis. Misunderstanding, the counselor thought he had said psorosis. The former is a skin condition, the latter is a serious liver disorder. Unfortunately, we left the appointment with no new information.

Our next big day came a short time later. This time we would be meeting with a neurosurgeon. I liked this doctor, though I can’t remember his name, but I’ll call him Dr. N (short for neurosurgeon). He was a gentle, soft spoken man, but you could tell he was smart. Dr. N was the first person that went through with us step-by-step what it meant to have hydrocephalus. He explained that when too much cerebrospinal fluid is present in the brain it needs to be drained to another part of the body where it can be reabsorbed. His job would be to go into our baby’s brain and place a shunt to drain the fluid. Then, he would insert a tube into the shunt and the tube would go from there, to the abdominal cavity. Dr. N told us the best time to do the surgery would be about two weeks after birth. I asked him if it would be better to deliver early so we could get the shunt placed as soon as possible. He said that it wouldn’t because the earlier a baby, the more complications that can arise. The best thing for me to do was get to full-term and deliver a strong baby. When I did get to that point, then they may decide to induce labor or schedule a C-section. One of the fears of delivering a baby with hydrocephalus is not only the increased head size, but also the pressure on the brain.

The visit with Dr. N was good in that it gave us a plan of action and we felt relatively confident in his ability. The bad part was our daughter would need surgery when she was only two weeks old. This was very hard for me to process. I thought I had been doing so well dealing with work, the disappointing ultrasound and the unproductive genetic counseling. Now I had to add future surgery to the list. There was too much happening too fast and I knew there was only more of the same to come. I began to get angry. This was totally and completely unfair. I had always thought of myself as a good and kind person. Why was this happening to me? I was only twenty-one years old for crying out loud. This stuff is supposed to happen to women over the age of thirty-five! This was not supposed to happen to me. I kept thinking that if I had been aware that age didn’t always matter, I could have at least been prepared for the possibility.

The funny thing about life is even during a crisis it still goes on. The most mundane things still happen: checking the mail, buying groceries, doing laundry. We didn’t have a washer or dryer in our house so once a week I loaded up my hatchback with our dirty clothes and headed to the nearest Laundromat, twenty minutes away. Other than carting the heavy baskets, I actually enjoyed going. Laundromats are surprisingly peaceful places. You can take a book and read with little interruption.

Bigger events happen too: Halloween came during this time, as did my first (and only) speeding ticket. I enjoyed Halloween that year. The staff at the school were allowed to dress in costume for the day. Thinking about what to wear helped take my mind off other things. I decided to go as a panda. I figured my expanding waist line would be an asset to the outfit. I wore a black turtle neck with a sleeveless white shirt over it, black pants, black gloves and a white knit hat that I put black ears on with hot glue. I also painted my face white with black around my eyes. I won’t say much about my speeding ticket. I’m still ashamed I got caught going 61 in a 45. If I had to get a ticket, it would have been cooler to get one going 86 in a 70 mph zone. Mark was shocked I got a ticket at all. Apparently, I drive like a grandmother.

Chapter 6: The Story Continues