Samantha & Hannah

After six months of unsuccessful attempts at conceiving on our own using basal temperatures and ovulation kits, we were referred to a fertility specialist. The doctor looked at the graphs and told us to throw them away; he said having a baby shouldn’t be so hard. It was clear that I was ovulating. After listening to my symptoms, the doctor thought that I had endometriosis, but he left it up to me whether or not to have surgery. We went through numerous tests and everything checked out normal for both my husband and me. I had surgery several years prior to remove pre-cancerous cells from my cervix, and the doctor thought that its secretions might be hostile, so he suggested inseminations. In November of 1994, I was put on clomid and we had one unsuccessful cycle with inseminations.

My symptoms worsened, and we found out that our insurance wouldn’t cover surgerywith this doctor after the first of the year, so I went for a laparoscopy in December. The doctor found several cysts on my ovary, which was stuck to the cavity wall, plus a lot of endometriosis. He removed all that he could and told us I needed stronger medication because of my condition. He said that he couldn’t believe that I could live with this so long. I was then put on two amps of Metrodin per day. My husband gave me the shots for the first week, then I took over because I felt more control in giving them to myself and it seemed to hurt (him and me) less. I ovulated on day seven of the first cycle, which was unsuccessful.

I was then put on two-month cycles starting on day 21 with Lupron and then Metrodin on day three after my period. We went through another round of inseminations and we were again unsuccessful. During these cycles, I was experiencing long waits each morning at the doctor’s office, since he didn’t take appointments. Women would line up outside the doors at five in the morning to be first in line. The office also had nurses who were very inconsiderate. I actually had a nurse go to draw my blood with her eyes closed! (She stuck everyone twice.) I also had a sonogram technician get angry with me because she couldn’t find my ovary. She left the room with the door open, with me holding the scanner between my legs to get help. (The other tech found it right away.) Needless to say, we were delighted when the head of fertility from our hospital joined the group.

We switched doctors for the next cycle. His staff was supportive and courteous and we were seen by appointment only. He explained that his office used a more thorough monitoring method and a more complete method of washing the sperm. He increased the dosage to three amps per day. I also began an herbal therapy (unbeknownst to the doctor) for endometriosis to help balance my hormones. When I went for the insems this time, I decided to think positively, be calm and to visualize the sperm meeting the egg and implanting. I began cramping just in time for my period. The nurse told me that sometimes cramping occurs when the egg implants, but I didn’t ‘feel’ pregnant. My call from the clinic that night confirmed I was pregnant. We were ecstatic! No more drugs!

I was immediately put on progesterone suppositories. At my first weekly ultrasound (5 weeks), I had one fetus. At the second, I had four. I was in shock and I cried when the technician told me. I always wanted twins, but never quads! The doctor took me into his office and told me that this never happens with inseminations. He was even surprised that I was pregnant, since my estrogen levels were so low at ovulation. He strongly suggested a reduction, since, he explained, first time pregnancies with three or more rarely end well because the uterus cannot expand enough to accommodate all the babies. He didn’t think they would all survive. I agreed to the procedure. I called my husband, who laughed at first, saying we’d need to buy more baby furniture, but agreed that we should have the reduction. We didn’t think my body could handle it and didn’t want to risk my, nor our babies’ health. We also didn’t feel we could handle four babies financially and raise them in the way we’d like or that was fair to them (I had to work regardless).

We were referred to a reduction specialist at another hospital. She again explained the risk of having multiples and told us that she had an 85% success rate with reductions, meaning only 15% of the reductions ended in miscarriage. We decided to reduce to two, so that we would not have to go through any fertility treatments again. She explained that the risk of carrying two or three is about the same, but we decided we could handle only two. I asked that the babies be tested prior to the procedure to insure the healthiest babies were kept. The doctor refused, saying we didn’t have enough risk factors. This was a terribly agonizing time. We didn’t tell our families what we were going through, since we didn’t want them to worry and we didn’t want to have to explain what we were doing to everyone. We told our parents we were having twins and to please not tell anyone until I was well into my second trimester.

I had the reduction at twelve weeks, when most women are over their first trimester worries. I asked the doctor to make sure she chose the healthiest babies and to be gentle to the other two. The procedure didn’t take long and it was painless (at least for me). The doctor said that it was the fastest and easiest reduction she had done. I spotted for about a week afterward, which was normal.

At week thirteen, I was turned over to my OB. I had been experiencing morning sickness throughout the pregnancy but otherwise, everything was fine. I was continuing to work full time and also to exercise and teach aerobics. After the morning sickness subsided at around week sixteen, I actually felt great. My ultrasounds were normal, as were all my check-ups. I was considered high-risk because of the reduction and because I was carrying twins. We also discovered that the babies were both girls and were sideways. I was very happy being pregnant. I enjoyed the smiles from strangers and the joy of telling people we were having two.

At week 22, my doctor asked me to stop exercising, again normal protocol for a multiple pregnancy. I began having Braxton-Hicks contractions at about week 25. The doctor said that was normal, especially with multiples, but asked me to monitor them closely. Also, twin A was growing more slowly than B, but the doctor said that happens sometimes with twins and we would have to monitor her closely. At week 26, the doctor asked that I stop working. My company set up a home office so that I could keep working without having to take maternity leave.

After my first week at home, I began to spot and the cramping became more frequent. I went to the doctor with my husband to find out what was happening. The doctor listened to the heartbeats with a Doppler and did an internal exam. He said everything seemed normal, but asked me to stay off of my feet and to come in if the spotting continued or got worse. It continued through the night, so I returned the next morning with my mom since my husband just started a new job.

This time, the doctor asked for an ultrasound. The technician, who is a sweet person, showed me twin B, but said she was having a hard time seeing twin A. She said sometimes the baby rolls into a position where you can’t see it clearly. She asked me to get dressed and put me on a fetal monitor until the doctor could come to review the pictures.

My doctor, who is usually a very jovial man, appeared in the room very serious. He brought me into an exam room and told me that baby A was dead. My head spun. I never even suspected that anything like this would happen. I asked what we needed do now. He told me he was admitting me to the hospital to stop the labor and that we needed to keep baby B in as long as possible. He asked me if I wanted him to tell my mom. I said no, and he brought her in so I could tell her myself. We cried until the doctor returned with a wheelchair. That was November 4, 1995.

He wheeled me up to L&D where they hooked me up to an IV. The resident did an internal exam (I wasn’t dilated, thankfully), and brought in the high-risk specialist. They told me they were going tokeep me in the hospital until I was stable and until they formed a plan. They gave me drugs to stop the labor. My husband slept on the floor in my room each night. I had an ultrasound the second day and they told me that baby B had plenty of fluid around her. Baby A’s placenta, however, was very close to baby B’s and the babies were lying sideways, so I would not be able to deliver naturally and they felt that taking Baby A would be too risky to Baby B. I was given steroids daily to help the surviving baby’s lungs grow more quickly. I was technically in the first stages of labor, contracting once every half hour or so, but not dilating. The doctors told me that if full-blown labor started, it would be too risky to stop it again.

We had only been to one Lamaze class, so we canceled the classes and took a tour of the NICU instead. The head nurse joked with us that she didn’t want to ever see us again. She told us that girls are generally stronger than boys and tend to have fewer problems, so we were lucky. As a coincidence, a very good friend of mine had delivered her baby at 24 weeks a month earlier. Her baby was stable and we got to take a peek at her. She was very small and skinny with tubes and wires all over. I hoped we would not wind up there.

The entire time I was in the hospital, no one from Grieving came to see me. (I found out recently that this was because the Grief nurse was on maternity leave.) Most everyone else was inquiring about me and the living baby, but not about my loss. No one mentioned her, like she never existed. I received lots of get-well cards and flowers, but only one sympathy card from my hairdresser. After four days, the doctors took me off the IV’s and I was told that I needed to go home, the insurance would not pay for me to stay anymore since I was ‘stable’. I was told to stay off my feet and drink a lot of water. (I could work if I sat.) I was contracting once an hour during the day and twice an hour at night. I was asked to monitor the baby’s movements and keep a diary.

I went home in the afternoon and was greeted by many bouquets of flowers from well-wishers. That night, my husband went to a family dinner so my sister-in-law sat with me. I went to the washroom and the cervical plug fell out of me. I wasn’t sure, so I called the doctor on call, and explained what I had been through the past week. He told me to relax and come into the office first thing the next morning.

My husband and I went to the office the next morning. My doctor was off that day, and one of his partners saw me. After an internal exam, he told me I was in labor, 3 centimeters dilated and that I needed to be admitted. The ultrasound tech took me to L&D this time, and told me my doctor was on his way in from home. I was lucky enough to get the same labor nurse. My husband called our parents.

When my doctor arrived, I told him what happened the night before. He was furious with his partner for not telling me to come to the hospital. He told me that the babies had to come out this time, and it would be by c-section since they were sideways. I was shaking all over uncontrollably and crying. The nurse prepped me for surgery and my husband changed into scrubs. Both sets of our parents were there.

In the delivery room, I was asked to try and hold still while the anesthesiologist inserted the spinal block needle. At first my legs felt warm, then numb. I got sick to my stomach for what seemed like an hour. My husband was admitted and sat next to my head. My doctor said, ‘You probably don’t want to see the first baby, since she’s been crushed, but I’ll leave it up to you.’ A nurse came by with a clipboard and asked us what we wanted to’do’ with the baby. With my doctor’s advice, we decided not to see her. We requested an autopsy and asked the hospital to take of her body.

My second daughter was born shortly after my first on November 9 at 28 weeks, with a wail: a good sign. I heard, ‘Apgar, 8’. I relaxed a bit. It seemed like the room was empty with just a few people when we started, and as soon as she cried, there were twenty people in the room. After a short while, a nurse (a girl I went to high school with), brought her to us. She was a tiny 2 lbs. 4 oz., but pink and alert. We gave her a kiss and she was whisked off to the NICU. The clipboard nurse asked us what her name was. We decided to call her Samantha. We didn’t name her twin sister.

I got to see her the next day after almost fainting from the pain while trying to get out of bed. I lost a lot of blood in surgery and was weak. She was doing well, breathing on her own. I went down frequently as I got stronger. I was also pumping milk for her every four hours. My mother-in-law walked with me down to the nursery where the full term babies were. It made me very sad and angry to see all those big babies. I went home six days later, still bleeding.

My daughter was in the hospital for three months. Her name tag said, Twin #2 next to her name. It killed me to see that. She did well most of the time, but her stomach was immature and blew up like a balloon when she ate. I seemed to have milk for the world and pumped enough to fill an upright freezer since she wasn’t taking more than a few cc’s. She got an infection over Thanksgiving and we got a call in the middle of the night from a doctor asking if they could do a spinal tap. We told them yes, anything to help her. She had gotten a bacterial infection from the central line. She laid there, not moving for days on a respirator while the antibiotics worked. It was so scary and we felt so helpless.

She did well from then on, needing transfusions only occasionally. Thankfully, I had a friend who was going through the same thing in the nursery and we also met a great family who had triplets the day after I delivered. Samantha was eventually moved to ‘step down’, which was a room on the delivery floor where they put the more stable NICU ‘growers’. It was a small room with about eight babies in it. It was nice to be away from the noise of the NICU, which holds up to eighty babies. I enjoyed the time there, since I could nurse her in a cozy room, rather than in the ‘pumping’ room in the NICU.

I had been working from home during my maternity leave, since I had no baby to take care of. I continued to bleed for eight weeks after her birth and had to have a D&C after the c-section healed to remove some placenta embedded in my uterus. After ten weeks, I had to go back to work, since my maternity leave pay had ended. My managers were fairly understanding, allowing me to leave early to get to the hospital. Acquaintances asked me how the twins were doing. After explaining to the first few what had happened and seeing that they really didn’t want to hear the news, I started answering, ‘Fine’.

The friends I made in the NICU were all starting to take their children home. I was happy for them but anxious to get my turn to bond and be out of this nightmare. I felt angry and sad as I watched my friend, Ginny, take her triplets home one by one before I could take Samantha home. Her babies were born the day after Sam, at the same gestational age. I was walking out crying, and her husband said, ‘It’s hard, isn’t it?’ He had no idea that I was enviously crying for the twins I should be taking home.

As her home coming (her original due date) approached, I got a call one afternoon from the doctor telling me her stomach was distended again, and they took her off food and were pumping out the air. I was furious. I felt that she was not being given the time to get the gas out of her system by the nurses (not her usual ones), who were rushing through her feedings. I was told that as the babies get better, the primary nurses move to more critical cases. She had been doing well, weighing over 4 pounds. There was nothing I could do but rub her head as she screamed for food. We were counting on her coming home on her due date, February 1. As she lay in an open bed like the one she was in when she was first born, I noticed she was getting really hot. I called the nurse over. She had forgotten to put the heat sensor on her chest and the bed just kept getting hotter. Again, this was not one of her usual nurses. I don’t know how bad it would have been had I not been there. I demanded they reassign her regular nurses to her, and they complied.

A nurse I had made friends with pulled me aside that night and told me not to let the doctors ‘play’ with her. She said that this was a teaching hospital and they would drag her stay out, doing test after test, putting her on food again and taking her off. My husband was beside himself with anger. He spoke with the doctor and told her he wanted answers, now. The doctors suggested testing her for NEC, and also recommended an experimental test which moved a tube down her digestive track. We agreed to all of them. The test results were all normal and inconclusive. We demanded they feed our child and let her come home. She was now almost 5 lbs. The doctors agreed to release her if she passed her heart rate/oxygen test, which took place over the next twelve hours. She was back on IV foods, but the lines kept falling out, so they had to keep moving them.

She passed her test, but a nurse found that our daughter had a hernia, most likely from all the screaming she had done the previous days. She was scheduled for surgery, which delayed her coming home again. I watched as a nurse struggled to get an IV in her arm, then her leg for her blood transfusion. Finally, my delivery nurse (my friend from high school) got the IV into a vein in her head. She had the transfusion. The next day, she was prepped for surgery. They left the IV in her head and were giving her the anesthesia through it. The surgeon was terrific. He told me not to worry as they wheeled her out. As I bravely walked out of the NICU, feeling like I didn’t belong there since my baby wasn’t in the nursery, a nurse asked me if I was OK. I burst into tears. (So did a mom nearby.) I went into the parents lounge and waited. The doctor came back with good news. All was well. They repaired her hernias so they would not recur. He told me I could see her and pick her up and she could be fed again.

She finally came home on February 4, three days after her due date. We brought her into the house and as I went to get her blanket, I cried. My husband was so excited he must have used three video tapes that day. She thrived at home, gaining weight quickly. We kept all but close family away until she was six months old. People understood and would come to look at her through the window. Since then, we’ve treated her like any other child. She was ‘caught up’ developmentally at 15 months old per the doctors and NICU follow-up staff. She still has scars all over her feet from all of the blood tests and little dots on her arms from the IV’s. She is two now and is doing great.

The autopsy revealed that Twin A was crushed and had a cyst-like, deformed brain. She had closed nostrils and a closed right ear, an abnormally shaped mouth and tongue, abnormally shaped fingers, oversized thumbs, and her umbilical cord was inserted abnormally. She was 37 cm. long and weighed 67 grams. I feel that she is better off wherever she is, but I still wish it could have turned out differently. Her genetic abnormalities could have been detected by testing the embryos prior to the reduction (as I had requested) and we might have had two healthy babies.

I nursed Sam for a total of six months. After I stopped, I didn’t feel quite right. My cycles were normal again but I found a lump in my abdomen near the scar from my c-section. I was sent to a surgeon who determined it was a hernia, probably from the surgery. I was also having signs that the endometriosis was back. I went to my gyny, hoping the two doctors could schedule one surgery to take care of both problems. My gyny convinced the surgeon to try and repair the hernia laparoscopically, to avoid cutting me again and complicating any future births.

I went into surgery in April, 1997. I signed a release to have my ovary removed, if necessary. I was petrified. It turned out that the lump was not a hernia, and the gyny removed the endometriosis from my ovary. My doctor was ecstatic when he spoke with my husband afterward. He and the other doctors told me to leave the lump alone. It was probably scar tissue, an adhesion or endometriosis. He told me that I needed to be put on Lupron for six months to try and reverse the endometriosis before I lost my ovaries to it, and then try to have children as soon as possible. He strongly suggested we seek fertility treatment instead of trying on our own.

I went through six months of drug-induced menopause. It was terrible, between the hot flashes, mood swings and constant bleeding for the first four weeks. I started an herbal program again to control the endometriosis. After my last shot in October, it took about six weeks before my cycles returned. In January, I switched insurance companies to cover fertility treatments. We had blood tests and I was scheduled for an HSG and endoscopy. The HSG went well, my tubes were open. The endoscopy was painful, and the doctor discovered an adhesion, which he removed with no anesthesia. He remarked on how tough I was.

We started our first cycle on Lupron in February, adding Repronex in March. I was not responding to the treatment, so they increased my dose to four units at night and two units in the morning. My hips were like pincushions, and terribly sore. I ovulated before a lot of the eggs were ready, but we had the inseminations anyway. I was then put on progesterone shots, so my hips never got a break. I had high hopes and tried to stay positive, but the cycle was not successful.

After reading several CLIMB newsletters and talking to Jean, I wanted to do something for the moms who’ve lost babies at my hospital. I called around and found the Grieving nurse and chaplain. They were very supportive and very sorry that no one took care of me when I lost my baby. They told me that they usually take pictures and locks of hair, and give the family gifts to remember their baby. I now make wreaths for bereaved parents that have a tiny angel on top. They are donated by our family in Hannah’s memory. We named her last year because I didn’t want to put ‘Twin A’ on the wreaths and I was also tired of calling her the ‘other’ baby.

I have told Samantha about her twin sister, whom she calls ‘angel’. I wish we would have received guidance while it was happening, so we could have handled her death and the arrangements better. I do have several ultrasound videos of her and her autopsy to remember her, even if it is a grim reminder.

We began our second attempt cycle and discovered after I began taking the Lupron that I was pregnant. I immediately stopped the drugs and started Progesterone. The doctor assured me that the drugs I already took would not affect the baby. I am currently in my first trimester, have terrible ‘all-day’ sickness and am very tired. I have seen the embryo several times now, and it has a heartbeat. We are still trying to figure out how this happened, since we were trying to avoid becoming pregnant on our own. I was spotting from the get-go, but it has been gradually tapering off and has almost stopped. My family and I are relieved that I have only one baby, and hope that I have a normal pregnancy this time. I’m sure every little bump and twinge will scare me, but I’m trying to do all I can to stay healthy. January, 1999 seems a long way off! I hope to make it full-term this time!

…She has had a subsequent daughter after an uncomplicated pregnancy.