Part I: Something's Wrong
My story begins very shortly after conception, when my stomach developed a very noticeable "pooch" and I knew that something wasn't right. At my first OB visit, the doctor told me that he thought I had a fibroid. He did an ultrasound in the office, we saw the embryo and he told me to come back in a week to see his partner (the doctor I had originally wanted to see). When I went back for my next appointment, my husband went with me - in fact, he went with me to all of my appointments from that day on. The other doctor examined me and did two ultrasounds - an abdominal one and a vaginal one. Both times she couldn't find the embryo. In fact, as I was laying on the table, she had the gall to say to me, "Are you sure you're pregnant?" This was after positive urine and blood tests and an ultrasound the previous week! I was furious. She suggested that perhaps I had what is called a molar pregnancy, sent me off for a chest x-ray immediately, mentioned "D and C" and sent me on my way without much information. I was devastated, and after doing some research on my own, I started fearing for my own health.
But something wasn't making sense to me. Of all of the symptoms that usually accompany a molar pregnancy, the only one I seemed to have was an embryo that couldn't be found. My Hcg levels were high, but still within the range of normal. So my gut told me to get a second opinion. I called the office of another OB that a friend of mine had been to and loved, and that was the beginning of a much better doctor-patient relationship. The receptionist could hear the anxiety in my voice and got me in to see one of the doctors immediately. When I saw the man who would become my OB, he arranged for me to have an ultrasound that very day.
Waiting for the ultrasound was nerve-wracking for me and my husband. Finally, it was our turn. I got settled on the exam table, had the goo spread all over my belly and waited, hoping to hear some good news. Not more than two minutes into the exam, the technician said the magic words: "Well, what do we have here? It's a heartbeat." I still get chills and teary when I think about it. Seeing that beautiful heartbeat fluttering away on the screen was magical, and my husband and I couldn't help but cry with relief
So why couldn't the other doctor find our little Gracie? Because she wasn't where she was supposed to be, under my belly button, that's why. Instead, she had been pushed to the side, near my hipbone, by whatever it was that was growing within me along with her. Now that we knew I was indeed pregnant, our next challenge was to find out what else was happening in there.
My OB consulted with a surgeon he works with frequently, a specialist in women's cancer, and set up an appointment for me to meet with him. Talk about another tense wait, sitting in that waiting room! We finally got in to see him, and after he had a chance to hear about my symptoms and examine me, the conclusion was that he couldn't say with absolute certainty what was growing within me without doing exploratory surgery. His first thought was that it was a type of ovarian tumor that would need to be removed, to be followed up with chemotherapy for me. His second thought was that it was a fibroid, though he didn't think so, as fibroids rarely grow as quickly as this thing had. He wouldn't know for sure until he looked inside, so surgery was scheduled for a Thursday in September 1999 - the first week of my second trimester. He wanted to wait until I was in my second trimester because it would be safer for my baby.
My surgery was performed with an epidural, just like those used during Cesarean sections. My doctor knew ahead of time that I wanted to avoid a miscarriage if at all possible, that I didn't want anything drastic to be done unless my life were in immediate danger. Assuming our baby would survive, I figured the worst thing that could happen was that I would wake up and still have that growth in me. When I came to, I was sick, vomiting and in the CICU. I had started having contractions and was put on magnesium sulfate. That was what was making me sick. I needed to be monitored while on the mag sulfate, but there weren't any beds available for the monitoring that I needed except in the CICU. Imagine the fear my husband and parents must have felt upon hearing that the surgery was over but that I was in the CICU!
Being in the CICU is mostly a blur, but I remember being transferred to a regular room. I remember my husband having to be the one to tell me that the tumor was still in me. It was indeed a fibroid, but because of its location, there was no safe way to remove it without the risk of a miscarriage. So there I was, cut from pubic bone to belly button and still burdened with a tumor that would only get bigger. But I was so grateful that Grace had survived the surgery.
I went home that Sunday and spent much of the next 18 weeks on some form of bed rest. I had to take a medical leave from my job as a high school math teacher. Some days were better than others. I think I drove our car maybe twice from September 1999 until the following April. As the days dragged on, just getting through them became an enormous task. I was in a great deal of pain, I was bored, I was lonely and I was depressed. I tried to constantly remind myself that each day was a gift to my growing baby, and that helped. I started keeping a gratitude journal in December, and that was helpful as well. I saw my OB at least once a week, had ultrasounds every three weeks starting around week 17 of my pregnancy, and then every two weeks up until Grace's arrival. We scheduled a Cesarean for March 15, 2000 - a vaginal delivery was out of the question, since the tumor was completely blocking the birth canal, and birthing Grace at that point would have brought her into the world just 2.5 weeks early.
Part II: Grace's Arrival
Grace, however, had other plans. On Friday, January 28, 2000, I wasn't feeling very good. I had been having a lot of Braxton Hicks anyway, but these seemed to be getting stronger and more consistent. Saturday was the same, and Saturday evening I called L&D. After describing what I was feeling, I was told to take a warm bath and try some Tylenol or a heating pad. I tried those things, but they didn't help at all. On Monday, I called a friend who was supposed to come visit for two days and told her that I wasn't feeling very good and that we needed to reschedule her trip. By Wednesday night, I was feeling really lousy. I started keeping track of my contractions - when they hit and for how long they lasted. My husband was sleeping on the window seat in our room so that I could try and get comfortable on our bed. He woke up to the sound of me talking on the phone at around 1 a.m., and by my tone he knew that we were headed for the hospital.
By 2 a.m. on Thursday, February 3rd, I was in L&D and my contractions were being monitored. When I talked to the L&D nurse on the phone, I told her that I was having 5-6 contractions per hour. In reality, they were coming every 1-2 minutes! It was incredible, and I was astounded. My OB's partner happened to be on call in the hospital that night, and he made the decision to try and stop my contractions with magnesium sulfate. I agreed, though I was worried about getting sick again. Luckily, I didn't this time around. By 7 a.m., my dosage had been increased two or three times, and still the contractions persisted. I remember my OB coming in bright and early, wearing blue jeans and a white button down shirt with the sleeves rolled up. He looked freshly showered. He and his partner consulted, and then they said to us, "I think today's the day." That sentence still brings tears to my eyes too. My husband and I looked at each other, and we were so scared. I remember saying, "She isn't ready! It's too soon."
I was given steroid injections to help boost Grace's lung development, and one of the two NICU doctors, the one who would be Grace's doctor, came to talk to us and help prepare us for what we would see when we went in the NICU to see Grace. He was terrific - very calm, very nice, and he made us feel as comfortable with our daughter's impending birth as possible. I had one last ultrasound there in L&D, and Grace looked like she was doing just fine.
Shortly before 10 a.m. I was wheeled into the OR to undergo the Cesarean delivery that would bring my daughter into the world two months early. My husband met me inside. I had an epidural, and the procedure got underway. I really don't remember much of what happened next, but apparently my doctors had to cut higher up than the epidural affected, because I was crying out in pain. (I have a vertical incision, not the bikini-cut type.) The anesthesiologist said the only way that the doctors were going to be able to get this done was if I was under general anesthesia. I remember exchanging "I love you's" with my husband, and then coming to in the recovery room. My husband got to hear Grace's first cry and said his world was changed forever.
Grace weighed just 3 pounds 7.5 ounces and measured 16.5 inches in length when she was born. She started off breathing on her own but had to be on a ventilator shortly thereafter. She was on the vent for a few days. After less than two weeks, she was moved to the 'step-down' room - still part of the NICU, but for babies in much less critical states. I pumped breast milk for her, but for most of her stay she had to be gavage fed. We attempted nursing, but between her small size, her underdeveloped sucking reflex, and the volleyball-sized tumor still in me, it was extremely difficult to get a good breastfeeding relationship established. So I pumped, and she got my EBM first through the tubes and later in bottles.
I didn't get to see Grace until the day after she was born due to my own recovery difficulties, but my husband and our parents all visited her. The nurses took two Polaroids of her shortly after her birth, and my husband brought them to me. It wasn't nearly enough to make up for not getting to see my precious daughter in person, but it was better than nothing at all. Seeing Grace for the first time was incredible. She was so small, and yet so perfect. And then holding her for the first time, amidst a sea of tubes and wires, both hers and mine, was absolutely heaven for me. Special kudos to my husband - he made sure that I was the very first family member to hold her. The nurses encouraged us to hold Grace skin-to-skin (Kangaroo care) and we happily cuddled our little girl against our chests. I called the NICU in the middle of the night almost every night to get an update on how Grace was doing. Finding out about things like her temperature and her weight were extremely important to me and helped me feel more involved with her life.
We learned so much about taking care of a newborn from the NICU nurses. They taught us how to swaddle Grace, take her temperature, change her diaper, bathe her - and to do it all with all of her wires and tubes, too. For the most part the nurses were very kind and compassionate. They let us bring in photos to tape up in Grace's isolette and drape a handmade quilt over the top of it to help block out the lights at night. We learned how to be more assertive with the one or two nurses that seemed to forget that we were the parents, not them, and we learned that it was OK to ask a lot of questions.
Grace never had any real problems associated with her prematurity, aside from just being very small. She did get jaundiced at one point, but it cleared up quickly. She was in an isolette for about three weeks, until she could regulate her own body temperature. Seeing her moved from an isolette to an 'open bed' was wonderful because it meant she was that much closer to going home. Before she was released, she had her vision and hearing checked and was examined by an occupational therapist; my husband and I also had to go through an infant CPR course at the hospital. She also had her first RSV shot while still in the NICU, something she would get once a month from October through April for two RSV seasons. As soon as she was able to take all of her feedings from the breast and/or bottle we were able to bring her home.
And bring her home we did, on March 4, 2000, a full four weeks shy of her original due date. She weighed 4 pounds 11 ounces when we brought her home. I made a point of giving her a tour of her home. I showed her her room, introduced her to our dog and cat and then came the moment I had been waiting for - I laid down with her on our bed and cuddled her. I couldn't have been any happier than I was that day. For most women, the birth of their children is their happiest moment. Not for me. Bringing my baby home, where she belonged - THAT was my happiest moment. Because she was still so small, she ate maybe an ounce at a time, which took a good 30-45 minutes, and she ate every 1-2 hours around the clock. My husband was terrific about helping with her feedings - he did almost all of the nighttime ones, especially while I was pumping - and my parents and in-laws did everything they could to help with her care and help around the house.
Visiting Grace in the NICU had been difficult for me because I still had the fibroid in me, and it wasn't shrinking at all as we had hoped it might once I wasn't pregnant anymore. I visited Grace at least 2-4 times a day, but sometimes my husband had to push me in a wheelchair - bed rest, two surgeries, being pregnant and a huge tumor had left me incredibly weak, and I still had a great deal of pain.
Part III: A Happy Ending
As for me, I finally had the tumor removed on April 4, 2000, 10 weeks after Grace's birth, 2 days after her due date. It weighed over 5 pounds, was the size of volleyball and was one of the ugliest things I have ever seen - I still have the Polaroid of it. I lost my right ovary, but that's OK, considering that when I consented to the surgery, I consented to a full hysterectomy, if needed.
As of this writing, Grace is a healthy, happy 16-month-old. She weighs about 20 pounds and is close to 30 inches long. She talks a little bit, climbs up everything, stands by herself and has just begun trying to take steps by herself. She's been incredibly healthy and doesn't seem to experiencing any setbacks from her prematurity. She is truly our Amazing Grace.