Wednesday, January 27, 2010

The Story of Emily, Chapter 7: From Bad to Worse

The Story of Emily

Chapter 7: From Bad to Worse

The thirty-second week of the pregnancy began simple enough. On Monday I started on my twice weekly appointments for a non-stress test (NST) at my regular doctor office. I went into a basic room with an exam bed and a machine on a cart. After I laid down on the bed (in a semi-reclined position) a nurse strapped two stretchy belts around my middle. One was to measure for contractions, the other was to pick up the baby’s heart rate. I was handed a devise that looked similar to a Jeopardy! buzzer. The idea was for me to click the button on the buzzer anytime I felt the baby move. The staff wanted to see a minimum twenty minutes of active baby and changes in her heart rate. If Emily was uncooperative after twenty minutes, they would bring me a sugary drink. The first non-stress test was amusing, a novelty. After that they began to get tedious. It was boring in the room with nothing to do but read a magazine, but that was hard to do one handed while half-way laying down. If only MP3 players would have been around! They were also frustrating when Emily didn’t move enough in the first twenty minutes. Then, the test had to start all over. This was especially exasperating when it would make me late for work.

I had only been working at the school for seven months and I was already having to take lots of time off. I always tried to schedule my appointments in the morning before I had to be at work by 12:30. However, I also wanted Mark to be there for the more important appointments, specifically the ultrasounds. He sometimes didn’t get home until 10 AM, so there was only a two hour window to schedule things. Every so often I wasn’t able to get an appointment at an optimal time. Starting in the 32nd week the appointments began to pile up. There were the NSTs twice a week, an ultrasound every three weeks and once a week I had to go in for a ‘normal’ check-up, plus a few others thrown in to the mix. If I had known back in June that I would be at the doctor office or the hospital 3-4 times a week, I wouldn’t have taken time off the week my parents, sister and brother-in-law visited. The enormity of what we were going through became much more stressful during this period.

One of the few appointments Mark did not get to make was the return to the genetic counselor for the results of our amniocentesis and FISH test. I know he wanted to be there, but scheduling conflicts got in the way. We weren’t really worried about what the test results would reveal. After all, we had already decided our path. We knew something was wrong with our baby’s brain. We knew she might not ever sit-up, walk or talk. We knew that she might be mentally and/or physically handicapped. Knowing this, we were already making arrangements for her care during the day. I had put her name down on the waiting list to get into the school where I worked. There was no better place for her to be than a school that was dedicated to kids with special needs and a place where I would always be nearby. We were preparing ourselves for any problems she may have. We already loved Emily and the results of some tests were not going to change that.

I went into the genetic counselor’s office fully expecting to get some answers. I figured that out of two genetic tests we would get a name for whatever had caused our daughter to have hydrocephalus. The counselor began by telling me that the FISH results were negative. At the time FISH only tested for Trisomy 13 (Patau syndrome), Trisomy 18 (Edwards syndrome) and Trisomy 21 (Down syndrome). This was the good news; the complications from any of those syndromes could be severe. The bad news was the amniocentesis results were inconclusive. Because we had waited so long to have the test done, the cells that they collected were old and they didn’t grow in the culture. There would be no concrete answers given that day. Trying not to sound too disappointed, I remarked, “At least we know she doesn’t have Trisomy 13, 18 or 21.” That’s when I heard the words that would forever change my life—again. She replied, “Yes, but we don’t know if she has something that is not compatible with life.” Stupidly, I had to ask her to clarify. What did she mean, ‘not compatible with life’? She went on to explain that sometimes a ‘fetus’ has a disorder that won’t allow it to survive outside the womb. Its existence is explicitly connected to its mother’s life. Once the baby is born and that connection is broken, then the inevitable will happen.

Well. Hell.

I left the office feeling numb. There were no tears and pain of heartbreak this time. I had been through the emotional ringer so many times in the past ten weeks. I didn’t have anything left to give. I’d had my hopes dashed too many times. Each time we went for an ultrasound we hoped the ventricles hadn’t gotten bigger. Each time they had. We had hoped the genetic tests would give us answers. They didn’t. All the way home, I just kept hearing the words not compatible with life, not compatible with life over and over in my head. Then the one question I had been trying to avoid snuck through:

Why hadn’t anyone mentioned to us that our sweet, sweet baby could die?

We had been so happy, so excited to find out we were having a baby. We had been pleased to find out we were having a girl. When we learned she had something wrong, we dealt with it. For the past two and a half months every discussion we had about Emily was how we would be her parents, for better or worse. We would get through whatever we needed to get through in order to give her the best life possible. But that was the point. Life. How were we going to deal with the possibility she might not make it?

After Mark got home we talked about the results of the FISH test and the amniocentesis. For the first bit we felt like the last teensy shred of hope had been sucked out of our lives. We faced our new greatest fear and discussed funeral plans. There was a small funeral home in our little town, maybe they could direct the arrangements. My parents were planning on flying in for Emily’s shunt operation. Maybe I should tell them not to make reservations with the airline until after she was born. I would need them sooner if she didn’t make it. This kind of talk dragged on for awhile.

Then we were going over what each and every doctor, nurse, sonographer and counselor had said to us. We realized that not once had we been given a straight answer for why Emily’s ventricles were enlarged. Percentage-wise, hydrocephalus was the most likely culprit; enough that it was her diagnosis. But that still left a small percent that it could be something else. What if that something else meant that the doctors had been wrong about all of it? What if there was really nothing different about our baby? Doctors have been wrong before. Programs on television were all the time running stories of cases where there were medical mistakes. What if our daughter proved to be one of those cases? Suddenly, we had hope to cling to again.

Even though Mark and I had some hope again, I was still thinking of the worst ‘what if’. I like to know what is going to happen. And if I don’t know exactly, I like to be prepared for the different scenarios. Every day I had to pass by the funeral home on the way to work. Just seeing the place and knowing we might have to use it filled me with despair. Then I would get to work and see all these kids who had gone through so much and I would be uplifted again. That is until I had to make the drive home. When I would pass the funeral home at the end of the day, I would think, “little white casket” and be down all over again. I would get to our house, get on the computer and read stories of moms that had lost their babies. I needed to know how to think and act if the worst happened. I needed to know what I was supposed to do, how to go on. I cried for those moms and babies and I cried for myself. I never shared those thoughts or actions with anyone. I was too ashamed and I thought it would make me look morbid. I tried so hard during the day and when I was with Mark to only project hope.

Chapter 8: A Miracle

Tuesday, January 26, 2010

The Story of Emily, Chapter 6: The Story Continues

The Story of Emily

Chapter 6: The Story Continues

Before our next hospital visit, Mark and I nailed down a name for our baby. I knew I wanted her middle name to be the same as my sister’s middle name. Now all we needed was a first name. It seemed like we couldn’t agree on anything. I personally liked Amelia for Amelia Earhart. She was a strong, independent female. Mark didn’t care for the name, nor what seemed like hundreds of others I passed by him. Finally, I got frustrated enough to go through the baby name book page by page. I wrote down all the names I even remotely liked. When Mark got home from work one day, I sat him down and made him say yes, no or maybe to every single name. When we got done, there were a total of five ‘yes’ names. From that list, we picked Emily. I liked that it was variation of Amelia and because of Emily Dickinson and Emily Bronte. Mark liked it because of some John Wayne movie. We both liked it because it was short, easy to spell and when written in all caps, it is all straight lines. Knowing our baby would have trouble writing (if she ever wrote at all) we wanted to make it as easy as possible for her. My only hesitation for the name was its incredible popularity.

It was good to walk into the appointment having a named baby. That was about the only good thing because Emily’s ventricles were still increasing in size. This time when they asked us about the amniocentesis, we agreed with the stipulation that we wait until after 30 weeks. I knew if I was that far along, even if it caused pre-term labor, Emily would have a greater than 98% chance of survival. We scheduled the amnio for the Friday after Thanksgiving—Black Friday. When I called my mom to tell her, she decided to fly in for the event. I was so happy she wanted to be there for it! I don’t do so well with invasive medical stuff and besides surgery you can’t get much more invasive than a very large needle being poked into your abdomen. Mark’s mom had been great about coming with us to all the big appointments, but sometimes a girl just needs her own mom.

On Tuesday before Thanksgiving my mom flew into North Carolina. She hadn’t seen me pregnant before. Well, she did back in June, but she didn’t know I was pregnant at the time. I think it was quite a shock to her. It was alarming how much weight I had gained. One of the ways I had dealt with all the stress was eating. I ate all day long. The kids at school had a morning snack, lunch and an afternoon snack. If there was any left over, the staff was welcome to it and I took full advantage. By this point I had already gained close to forty pounds and I still had over two months to go. In fact, the next day I had a “regular” OB appointment with a visit to their nutritionist tacked on the end. I didn’t take what the nutritionist said to heart. Heck, I don’t remember much about her other than her telling me to eat Wheat Thins. I was much too worried about Friday to really care.

Black Friday. Only later did the irony become apparent. We had to be at the hospital by ten, but surprisingly the traffic wasn’t bad. I guess all the crazy shoppers had come and gone. After we got checked in, we went into the ultrasound room. There, I laid on the table/bed and pulled my very attractive maternity pants down below my expanding belly. A doctor, nurse and sonographer came into the room and it was time for the amniocentesis. Silly me, I asked if they numbed the spot first. That was a definite ‘no’. Wonderful. The sonographer squirted some jelly onto my belly and used the probe to find a pocket of fluid. When the pocket was located, the nurse prepared to hand the doctor the needle. It was at this point that I closed my eyes and gripped my mom and Mark’s hands. I didn’t need to see the needle. I knew by reading and seeing pictures that it was a very LARGE needle. I also knew that it was really a long, hollow steel tube. They just called it a needle to make you feel better. The doctor inserted the needle into my stomach, very close to my belly button (in truth it might have actually been my belly button) and began to draw out fluid. I heard some shuffling and asked if it was over yet. Nope. They had decided, without asking me, to take some additional fluid for a FISH test. Terrific. I squeezed my eyes tighter. This was definitely something I didn’t want to see. However, I swear I could feel the fluid being drawn. I felt like I was 7 years old again getting a shot at the doctor’s office and trying to be a big girl and not cry. I succeeded, but just barely.

After it was all over, I pulled my pants back up and prepared to leave. We were informed the FISH test results would be back the next week and the amniocentesis would take about two weeks. I was told to walk as little as possible the rest of the day, to take it easy and basically be pampered. Nevertheless, I needed (or thought I did) to go to the store. We dropped Mark off at home and my mom and I went to Wal-Mart. We had this great idea that she could push me in a wheel chair. It was fine at first, and even a little fun, in a kid-like way. That is, until Mom left me among the clothing racks to look at something else. Bless her heart, she didn’t mean to leave me stranded, staring at a row of blue pants, but that’s what I was. I wasn’t supposed to walk so getting up wasn’t an option. Neither was I supposed to exert myself, so no pushing the wheels with my hands. I couldn’t yell for her either because that would be stressful. In that few minutes, I gained a new appreciation for those confined to wheel chairs. It is an incredible lonely feeling to be helpless.

My mom had to return to Texas by the end of the weekend. Before she left, she (and my dad) gave us what was probably the best early Christmas present ever: a washing machine! We went to town and picked one out. We also bought a dryer to go with it. Lowes delivered them that afternoon. I was so excited! I didn’t mind doing laundry at the Laundromat, but a few weeks prior I had injured myself carrying the heavy baskets. I had been unloading the baskets from my hatchback when the strain pulled some ligaments in my lower belly. Thankfully, that was all it was, but with everything else going on it was enough. Having the new washer and dryer helped take the sting out of Mom leaving. I knew I wouldn’t see her again until after Emily was born. Little did I know another rough time was approaching.

Chapter 7: From Bad to Worse

Thursday, January 21, 2010

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

Wednesday, January 20, 2010

The Story of Emily, Chapter 4: Devastation

(A note from me: this chapter was the hardest thing I have ever written. I hope I did it justice.)
The Story of Emily

Chapter 4: Devastation

Just shy of 23 weeks gestation, Mark and I went to my regularly scheduled appointment on a Friday. I was happy we would be meeting with Dr. M that day. He was the friendliest doctor in the practice and I liked him the best. He did the routine stuff like measuring fundal height and checking the heartbeat. Dr. M looked at my chart as we were getting ready to leave. He must have noticed I had an ultrasound at 14 weeks, but not one since then because he asked us about it. Most women have an ultrasound between 18-20 weeks. I knew this, but failed to mention it at my last appointment. I was happy just to have the one. I knew if I had another one, I would not resist finding out the gender. I told him all this and that I didn’t really want to have another ultrasound. Dr. M was persistent though, and insisted we needed to have another one.

The sonographer was available right away so Mark and I walked down the hall and into the room I had visited only eight weeks before. In spite of my hesitation at having another ultrasound, I was a little nervous and a lot excited. I couldn’t wait to see our baby again. I began to think how lucky I was to get to see him/her a second time. The sonographer started her work (a tummy one this time!) and almost immediately she picked up on the gender. She asked if we wanted to know what we were having. I looked at Mark and he looked at me and I told her to go ahead and tell us. She typed onto her keyboard, where we could see it on the screen: Baby Girl Ch---. I looked at her and I vividly remember saying, “You’re Joking!”

I couldn’t believe we were having a girl! I said as much to Mark—several times. I spent the rest of the ultrasound in surprised, but happy, disbelief. As the sonographer went about her business, I asked only a few questions. I really thought ultrasounds this far into the pregnancy were to check for gender. We must have spent close to an hour in the room, but it was pleasant to spend so much time looking at our baby. Her heart was in perfect shape and that had been my only concern. Every mother and father looks to that little black and white screen to see their baby’s heart beating. After the sonographer finished her assessment she handed me a towel to clean up while she went to give the report to the doctor. I didn’t think anything of it. I was still riding high on the news we were having a daughter—a daughter I wasn't expecting.

When the sonographer came back to the room, she had one of the midwives, AL, with her. AL asked Mark and I to come to her office to talk about the ultrasound. Since this was my first go-round, I was still completely in the dark. For all I knew, every mom and dad was invited into the office after an ultrasound. Mark and I sat down in the chairs across from the midwife’s desk. I was still smiling with our news (it’s a girl!) until I really looked up and into AL’s face. I could tell she had some bad news to deliver. AL began by telling us they found some abnormalities. I heard only the words: Enlarged. Ventricles. Brain.

For a second, my own brain shut down. I could feel the throbbing of my heart in my head, but I couldn’t think. My mind went somewhere else. Someplace where there was only a blank screen, a place where I was numb. I struggled to come back to the moment so I could hear what else the midwife had to say. But there was a price for staying in the present: unbelievable anguish. Though I tried to hold it together, my whole body began to tremble, and my breath began to hitch. Trails of tears streaked down my face. From deep inside, pressure and pain began to build to a level where I thought I might explode. My chest was hurting; my heart was breaking. I didn’t want to fall apart there in the office. I wanted to run away. I wanted to be away from the kind, pitying face of AL. I wanted to be away from all the happy, expectant mothers I knew were waiting in the waiting room. I wanted to crawl into Mark’s lap, lay my head on his chest and let it all out. I wanted to be away from this pain. I wanted to be safe. Instead, Mark held me as close as possible in chairs side by side and we listened.

AL explained that there are four ventricles in the brain and two of our baby’s were enlarged, one more than the other. These ventricles are areas in the brain through which cerebrospinal fluid circulates. She wouldn’t go into detail of what this meant for our baby, only that it was serious. Wanting to look for any ray of hope, I asked if the ultrasound could be wrong. Her grim expression told me all I needed to know, but what she said was, “Anything is possible.” I latched onto that tiny bit of hope like it was an anchor that would keep me from floating away. In another way, it helped me become numb again for a time.

Mark and I left the building that afternoon different people than we had been when we entered. Personally, I had had one of the best moments of my life and the very worst. We also carried with us two new things. One was an appointment card for a level II ultrasound at the hospital for the very next morning. On the back was written the name of our baby’s condition: ventriculomegaly. The other was a prescription for two sleeping pills. Mark knew how distraught I was so before we walked out, he asked the midwife for something to help me sleep. She hesitated at first until Mark said he was afraid I would stay up all night worrying. Sometimes I wonder if she only gave me two pills because I was pregnant, or because she was afraid I would commit suicide.

I didn’t go to work that day. I simply called them and told them something was wrong with the baby. It was the first time I said the words out loud. Mark called his boss who told him to take the night off and we went home. One of the first things I did was call my mom at work. No matter how old a person gets, in a crisis, they want their mom. Never had I wished so hard that we lived close to one another. For the second time that day, I cried. Not so much for me this time, but because I knew my mom was going to hurt too. This was supposed to be a happy call—a call to say, “It’s a Girl!” Though it was a difficult thing to do, making that phone call helped me feel better. She told me no matter what, the baby would be loved by our family.

Next, Mark called his mom, a former RN, to tell her the news. We were hoping she would have heard of ventriculomegaly. She hadn’t, so we turned to the internet. The information we found was very limited. We didn’t find one single reference to ventriculomegaly. Much has changed over the past nine years, today there are over 56,000 matches. There was no “Dr. Google” or Wikipedia available so we searched for other key words, all to no avail. Exhausted by our long and emotionally draining day, Mark and I got ready for bed. I took out my bottle of sleeping pills. I shook one into my hand and stared at it. Part of me wanted to take it and sink into nothingness. Another part held me back. I was already hollowed out and empty, I didn’t want to be oblivious too. I put the pill back into the bottle and sat it on the nightstand just in case I needed it during the night. We cuddled together that night, comforting each other in a world that had changed so dramatically in such a short amount of time.

The next morning came early. We were supposed to be at the hospital at 7:45 which meant we had to leave the house at 7 o’clock. Mark and I woke up to the worst rain I have ever seen in my life. The sky was still black when we left the house and the rain was coming down in buckets. The creek that ran through our front yard had come out of the banks and was coursing more like a river. Thankfully, the creek hadn’t yet reached the level of our driveway, but it was close. Unfortunately, Mark had parked the Bronco in a lower part of the yard and the creek was up to the running boards on one side. Later, we would learn our town had four inches of rain in an hour.

While the rain was aggravating, it was a good distraction from what was really on our minds that morning. All the way to the hospital, I was still hoping the ultrasound from the day before had been wrong. We arrived in time and went upstairs to the high-risk obstetric unit. Soon we were called back to the radiology room for the level II ultrasound. I thought level II meant different equipment, but I was wrong. What it means is first, a sonographer does a preliminary scan, then a perinatologist comes in to complete it. I didn’t care much for the perinatologist (I don’t remember his name, so I’ll call him Dr. X). He was all business as he used the probe to find Baby Girl’s brain and measure her ventricles. I tried to talk to him several times, but received one word responses. I was looking at this baby I already loved on the screen, and he was treating me like I was wasting his time.

Dr. X finished the ultrasound and told us that Baby Girl did indeed have enlarged ventricles. There was no softening the blow this time, just cold, hard, fact. Before Mark or I had a chance to recover from this information, Dr. X proceeded to tell us that I was beyond the date for termination in North Carolina, but if we wanted to go to Virginia they would do it up until 24 weeks. I couldn’t believe my ears! Here I had just been telling him how concerned and worried we were about this little baby and he was encouraging us to get rid of her like she was a broken toaster. It was then that I realized we were going to have to fight for Baby Girl every step of the way. We were the only ones looking out for her best interest. I told him, very clearly, “You can just skip over that information. We’re not interested.”

Even though Mark and I were both fuming at this point, we needed answers. We asked what the enlarged ventricles meant. He told us that there were many possibilities, but the most likely was hydrocephalus (water on the brain). This word was not foreign to me. I knew from my job what it was like to teach and care for a kid with hydrocephalus. What I didn’t know was what it was like to be a mom to one. We needed to know what the next step was. Dr. X said that we would need to come back for a level II ultrasound every three weeks for the remainder of the pregnancy. He suggested we consider an amniocentesis for the next appointment and he also wanted us to meet with a genetic counselor then. In less than twenty-four hours I went from having a very easy, normal pregnancy to a complicated, high-risk one.

Chapter 5: Life Goes On

Monday, January 18, 2010

The Story of Emily, Chapter 3: Pregnant Bliss

The Story of Emily

Chapter 3: Pregnant Bliss

After Mark had read his card and the news had sunk in some, he was still grinning like a fool. Timidly, I asked him, “Are you happy about this?” He looked shocked that I had asked such a question. I didn’t know that I had insulted him. I didn’t realize he would be so happy that we had created something together out of our love. By asking the happiness question, I had questioned his love for me. Once we had established that we were both happy to be having a baby it was time to spread the news.

Once I had given my parents time to get home, I called them first. I had to track them down at my grandmother’s house. When I told my mom, she didn’t believe me at first. They were just here and she hadn’t seen me sick or otherwise pregnant-like. Besides, if I just found out, wouldn’t I have told them before they left to go home? Sorry about that Mom, but I had to tell Mark first. I think we called my mother-in-law next, then my father-in-law. We stopped after those, deciding to wait until we knew more—like a due date.

I didn’t have a doctor yet. I hadn’t planned on trying to have a baby for another nine months, let alone to actually be pregnant already. I knew I could get any number of recommendations in Texas, but I didn’t live there anymore so that was useless. What to do? What to do? I decided to try a pregnancy center I had seen on my way to grocery shop. I figured they could at least point me in the right direction. A nice lady talked to me for a little while, had me pee in a cup and predicted my due date with one of those wheels (girls you know what I’m talking about). Then she wanted to pray with me. Whoa. Back up a minute. I have nothing against prayer, but I was under the impression that this place was to help pregnant women, you know, like medical—not spiritual. I kept this thought to myself, but I was a little apprehensive at this point. It wouldn’t be until I started getting calls at home that I realized the place was a Christian based Pregnancy Crisis Center. They were used to counseling women that didn’t want their babies or girls kicked out of their homes for being pregnant. Oooops!

Time for another approach. Working in an environment with small kids has its advantages. Many of these small kids were recent big brother/sisters or on their way to becoming one. Expectant mothers of these small kids pick them up in the afternoon and literally bump into me. I hadn’t been working very long at the school by then, but I had worked in one class more than any other. One of the moms was due in a few weeks. I asked her where she went for her prenatal care and she mentioned a group practice. I went home and looked them up on our insurance, then gave them a call. I scheduled my very first prenatal appointment for the following month (July). I already had three positive tests so they knew I was pregnant. There was no need to go in any earlier.

Our life continued very much like it did before I found out we were going to have a baby. I continued to work part-time at the Special Children’s School and Mark continued working nights. There was still no sign of morning sickness and I felt great most of the time. My appetite had increased, but I did have one aversion. Sweets made me feel ill. Not throwing-up-sick, but just blah. I loved Little Debbie snacks, but I could no longer tolerate them. The brownies, oatmeal pies and other assorted goodies of my childhood were no longer appealing. Energy wise I was fine too. I never felt the fatigue I had read as a symptom. I felt really revved most of the time. I guess maybe I was riding on an emotional high. I was so happy to be having a baby even though it didn’t seem real yet. Every morning I got up and thought, “Hey, I’m knocked up!” Or something like that.

Since Mark worked at night, he was able to make almost all of my doctor appointments. We went to the first one sometime in early July. The practice had four doctors and three midwives. All of them could do prenatal visits, but only the physicians could deliver. Mark waited out in the waiting room while I talked to a midwife. I didn’t know if they would be doing an exam or what. She got my background and then asked how far along I was. I didn’t know but guessed about eight or nine weeks. The midwife thought we might be able to hear the heartbeat and got out the Doppler. Right away she found the swish-swish sound of the baby. I was immediately enthralled. Suddenly it was all real! I told her that my husband just had to hear this. She went out and brought Mark back with her. Together we listened to our baby for the first time.

Because I hadn’t been paying very close attention to my body and because I was on birth control, our actual due date was somewhat of a mystery. It was kind of decided that February 12th was a good date. For one, my favorite number is 12 and for another, I thought maybe I would go late and the baby would be born on Mark’s birthday. Medical professionals like to be precise though so it was decided I should have an ultrasound on my next visit to date the baby. That was okay by me. It would be too early to tell the gender and Mark and I had differing thoughts on that. I wanted the baby to be a surprise and Mark was in favor of finding out what we were having.

A month later we returned for our appointment and the ultrasound. Boy was that a shocker. Unless you’ve been there, you probably think all prenatal ultrasounds are on the tummy. Correct? Um, no. They are not all on the tummy. Some are, in fact, vaginal. Yep. I said it. Vag-i-nal. Nevertheless, I endured the rather humiliating experience so we could see our sweet baby. What amazed me was how completely developed our little human was. He/she looked like a real baby already. He/she even waved at us. I most definitely had not felt the baby move yet, but here he/she was twisting and kicking and showing off. The technician asked, “How far along are you?” I said, “I think 12 weeks, but we’re not sure.” Then she replied, “Well according to this, you are 14 weeks and 4 days.” Ooops, again. Guess I really should have paid more attention. We now had a new due date: January 29, 2001.

For a few more weeks our life was routine. Mark was putting in long hours at his job. He had been promoted back in March and he was determined to prove himself, especially now that we had a little one on the way. He was working up to 12-16 hours a day and had a 3 hour commute round-trip so he wasn’t home very much. I was enjoying working at the school, even though I was still only part-time. What made it even better was the number of pregnant co-workers. By the end of 2000 there would be nine of us expecting, a full 1/5 of employees. Jokingly, we started cautioning everyone about drinking the water. I had also found a fantastic online community of expectant moms. It was amazing to connect with women all around the world going through the same experience.

I was relieved that we were able to get through our previous ultrasound without the gender being revealed. I didn’t think it really mattered anyway since I just knew we were having a boy. Mark is one of three boys. His paternal grandparents had nine kids, eight boys and one girl (and she was next to last). I knew fathers determined gender. Besides, I read once that the greater the age difference between a man and a woman, the greater their chance of conceiving male offspring. With family history and Mark being twelve years older than me, the odds of us having a girl were slim to none. I had all of this on my mind when we went for a check-up at twenty-two weeks.

Chapter 4: Devastation

The Story of Emily, Chapter 2: Surprise!

The Story of Emily
Chapter 2: Surprise!

My parents, sister and brother-in-law planned to make a trip to North Carolina in June. I was so excited to see them! One of the best parts was they would be here for my 21st birthday. Even though I had barely begun working for The Special Children’s School, I took the week off to spend time with my family. Just so you know, I told the school before I was hired that I would need the time off. They didn’t have a problem with it. Mark didn’t have the same privilege that I did so he continued to work that week.

While Mark was working so very hard, the rest of us took off to the beach. We went to the Outer Banks and stayed at the Cape Hatteras KOA. Other than my dad’s horrible snoring (I shared a cabin with him and Mom) and the mosquitoes, it wasn’t half-bad. I wore a bikini for the first time since I was a year old! Falling in love and getting married had trimmed my waist line. I was down to the smallest size of my adult life. Size 5 shorts and 127 lbs. A little different than the 142 lbs I carried around in high school. But enough about how fit I was!

We all enjoyed the beach part of the vacation. I was happy to see some of North Carolina that I hadn’t before. We drove around and saw four different lighthouses: Bodie Island, Cape Hatteras, Ocracoke Island, and (I think) Currituck Beach. I’m fairly certain Mom and I liked looking at the lighthouses more than anyone else in our party. Since we weren’t that far away, we also went to see Kitty Hawk and Kill Devil Hills. It was interesting to see the place of the first flight. The landscape was different than what I had expected; picture a sandbox that hasn’t been tended in about 3 years and there are almost as many blades of grass as there are grains of sand.

After about four days of the beach, we headed back to my home in the foothills. Still, there was much I wanted my family to see. I had a grand time showing off my new state to my family. Mark and I hosted a bar-b-que so his family and our friends could meet my family. That night I played soccer with our friends’ kids. I hadn’t had so much fun running since I was a kid myself. If I remember correctly, my sister and my mom joined in which made it all the more fun. Another day we drove to Mt. Airy, the town Mayberry is based on in The Andy Griffith Show. We even toured the museum there. While we were out, we kept driving to Virginia so they could add another state to their list.

It was on this trip to Virginia that my dad said something to me that I will never forget. We were driving back and I asked them to stop at Bojangles. They don’t have this fast-food restaurant chain in Texas and I wanted my family to have the experience. I got some sort of chicken sandwich, but I could only eat half. I wrapped up the other half to bring home. As soon as we got back to my house I was hungry again. As I’m unwrapping my sandwich my dad asked me, “Christi, are you pregnant?” I scoffed at him and said, “No, of course not”.

But my dad’s question had gotten me thinking. I hadn’t been sick in the morning, on the contrary, I felt better than I had in years. However, I couldn’t for the life of me remember the last time I had a monthly cycle. I was on birth control pills so I never gave it a thought. There was only one thing to do. I happened to have a pregnancy test in my bathroom. On a Friday afternoon with no thought to morning pee, I took that test. I didn’t have time to think or wonder before those two pink lines showed themselves. I just stood there bewildered for a moment………or two. When I could find my voice again, I went to find my sister. She was packing her bags because they were all leaving that evening. I asked her to come and see the test. I’m betting her face was a mirror of mine. I told her she could tell my brother-in-law, but I asked her not to tell my parents. I wanted to tell them myself after I had told Mark. He was working nights and wouldn’t be home until the next morning.

All that night I worried about how to tell Mark and how he would take the news. We had discussed starting a family recently, but we had planned on waiting another 9 months. How ironic! I had been planning on going back to school and he wanted to be more secure in his job. We wanted to save up some money, buy a second car and prepare. Somewhere amidst all my worrying, I came up with a plan. First, I would buy another test, just to make sure; after all, no sense in worrying over nothing. Second, if it was positive, I would buy a Father’s Day card to give to Mark. Sunday wasn’t that far away, surely I could wait that long to tell him.

I went out early and bought the second test and the Father’s Day card. Like the first test, the pink lines showed up immediately. And once again, I was in shock. I wanted to be happy, but until I knew Mark’s reaction, I was holding myself in check. I had always thought we would plan when to have a baby, try for a few months and then be jumping up and down when it finally happened. Without those string of events leading up to the news, I didn’t know how to react. It turns out that I could not wait another day before telling Mark. After he got home, we sat on the bed like we always did before he slept for the afternoon. I told him I had something for him and I handed him the card. I don’t think he made the connection that the next day was Father’s Day, he just thought I was giving him a card. I don’t remember exactly what it said, only that I signed it “Love, Baby”.

Mark opened the envelope, pulled out the card and read the front with a puzzled expression on his face. He opened the card, read the inside, then for good measure turned it over to read the back. I’m sitting on pins and needles waiting for a word from him. I guess to make me crazy, he starts from the front again. It’s a card with very limited wording; I’m fighting the urge to start gnawing my nails. When he gets to the part, “Love, Baby” again, a sweet smile starts spreading across his face. Mark looks at me with look of love and total wonderment. The question is in his eyes and I say, “I think I’m pregnant.”

Chapter 3: Pregnant Bliss

Sunday, January 17, 2010

The Story of Emily: Foreward & Chapter 1

The Story of Emily


For years now, I have wanted to write down all the thoughts and feelings I had about the pregnancy and birth of our oldest daughter. For one, I wanted to have a written account I can look back on when my memory begins to fade. For another, I wanted to foster understanding by sharing our story. As Emily approaches her ninth birthday, I decided that there was no time like the present to get the words on paper. This is a story of a little grief, a good dose of fear, and a whole lot of hope. There always has to be hope.

Chapter 1: The Back Story

Mark and I celebrated our first anniversary on December 21, 1999. We had just bought our first home in North Carolina and he had recently begun a job with his current employer. We only had one vehicle at the time and since he drove over 160 miles round trip every day and was gone for 16 hours a day, I became a housewife by default. However, I was a registered substitute teacher with our county school system. The local elementary/middle school was only a mile from our home so I started subbing there as much as they needed me. I could easily walk to work. These walks most likely contributed to me becoming more fit than I had ever been in my adult life.

May arrived and while owning our own home was nice, things were tight in the pocket book. This was especially true with Mark having to pay for all that gas to and from work and with me not being needed every day at the school. I needed full-time employment, or at the very least consistent employment. But because we lived in a very small town, walking-distance jobs were scarce. We talked things over with my Father-in-law and he agreed to loan us one of his seldom used vehicles, an older model Ford Bronco. Now that we each had something to drive, I could begin my job search in a broader radius.

I thought, at that time, that I might want to be a teacher someday. I had gone to college with the intent to become a high school English teacher. I had made it through my first semester of my sophomore year when I quit school in Texas to move to North Carolina to be with Mark (but that’s a story for another time). Before I had moved to NC, I had mostly worked in an office setting. I could have gone in search of another office job, but I thought I should look for a job that would enhance my teaching goal. In other words, I wanted to work with kids, preferably high school or middle school age.

I decided to drive twenty to thirty minutes from our house in every direction. Surely, I would find something out there. I knew without a college degree I couldn’t be an actual teacher, but maybe I could find a job as an aide or something. I have some trouble with my exact religious beliefs these days, but what I am about to share makes me believe, without a doubt, in a higher being. As I started my first twenty minute foray, I prayed to God. I asked Him to lead me to a job that I needed. Needed. I think that’s the key word. I didn’t ask for a job that I wanted, but one that I needed. Months later, I would realize that He knew exactly what He was doing.

My first stop was a little, private Christian school. I knew by the marquee that it was a school for kids in kindergarten through twelfth grade. I went in and talked to the very nice secretary. I had a nice chat with her, but I realized that this was not the right environment for me when she mentioned that all females in the school had to wear dresses or skirts every day. Anyone that knows me knows dresses and skirts are special occasion only clothes for me. They are meant for weddings, funerals or a nice date with my husband. They are not every day wear. I politely excused myself and got back in my car to try my luck someplace else.

Just a little further down the same road, a sign caught my eye. It said, The Special Children’s School, and it had silhouettes of young kids on it—one was in a wheelchair. My curiosity had me turning into the drive of the school. I had always held a special place in my heart for those with disabilities. More, working with kids that happened to have disabilities was in my blood. My mom, dad, grandparents, various aunts and friends of the family had all at one time or another worked for a particular facility that took care of people with disabilities. I was raised all my life to treat all people the same. I was never disturbed, or worse grossed-out, by those that were “different”. Looking at the school on that sunny day in mid-May, I knew I had found the place I was meant to be.

I went in, filled out an application and had an interview within days. At first all they could offer me was a van monitor job from 7:30-9AM and from 2:30-4PM. It would mean traveling to and from the school twice a day, but at least it was steady work. I also signed on to be a substitute, figuring I could fill in the gap some days with more work. I was fascinated with the school. It was for children with special needs, ages birth through pre-K. They also had a wonderful inclusion program which means having “typical” kids learn side-by-side with the kids with special needs. At the time “typical” kids could start at around 18 months. The infant rooms were totally dedicated to those with disabilities. On site, the school also provided occupational, physical and speech therapy by full-time therapist. There was at least one nurse there at all times and meals were planned by a nutritionist. As far as quality goes, this school got an A+. Every lead teacher in each classroom had a bachelor degree in early childhood development and all of the other staff were well trained. I learned so much working there. Soon, I was offered a position working as a part-time floater. I came in at 12:30 and left at 5:30 when the school closed for the day. My job was to help out wherever I was needed. This afforded me the opportunity to work (and learn) throughout the school.

Chapter 2: Surprise!