On May 28, 2002, my husband and I drove excitedly to our first ultrasound appointment with video in hand. I was 18 weeks pregnant, and we were going to find out if we were having a boy or a girl. We were thrilled that we were going to have a baby together. Scott and I were married in 1996 and he had been an excellent stepfather for my two older boys, Spencer, 12 and Austin, 9. I couldn't wait for us to have a child of our own.
Once in the examination room, we could hardly wait for the technician to begin. Scott and I watched the monitor intently as she moved across my stomach. Almost immediately, she announced, "Well, it looks like you are having twins!" Stunned and a little panicked, I muttered a very shaky, "What?!" The first thoughts running through my head were 'two cribs, two highchairs, two car seats, twice the diapers, twice the feedings, etc…'. My husband had been leaning against the wall and he very slowly moved towards me. I was so fixated on that monitor, I could barely turn my head away to look at Scott. We just reached for each other in that dark room. Once I felt his hand in mine, my thoughts immediately shifted to those of joy and excitement. We both watched that monitor with huge grins on our faces for what seemed like hours. We were so excited. We were going to have two babies together, identical twin boys! After giving us initial measurements, we learned that one was much smaller than the other one. As the technician continued her exam, she was very quiet. I started to see concern in her face. She finally spoke after what felt like an eternity, "I'm going to have a doctor come in now to talk to you." My husband and I had not let go of each other and when our eyes met, we were both in tears. I was barely able to make the words come out of my mouth…something's wrong."
That day we learned that our twins suffered from twin to twin transfusion syndrome, TTTS. We were inundated with information and spent over 2 hours in the doctor's office that day. We learned how this awful syndrome had claimed the lives of so many twins and how critical the situation was. Left untreated, our twins would surely pass away. One option was to begin regularly draining the amniotic fluid from the larger baby's sack to help relieve the pressure in the uterus. Another option was to undergo laser surgery. There was a third option, to end the pregnancy, but that was no option for us.
We had our first of five drains the next day, draining off almost 2 liters from my uterus. The amnio drains continued once a week for the next 5 weeks. The drains were painful and caused contractions. Although the actual drains only took 30-45 minutes, because of the preparation work before the procedure and trying to stop my contractions after the procedure, we usually spent the day (6-8 hours) in the hospital.
I was on strict bed rest and could only get up to take a shower and use the restroom. After five drains in five weeks, it was clear to my husband and I that something else had to be done. We began researching day and night. We were desperate to learn everything we could. My husband was relentless in finding information. There came a point in time when I just couldn't stand to read any more. The odds were against us and I just couldn't stand reading over and over the information. But, we were determined to save our babies. After this extensive research we knew the drains alone would not save our boys.
We contacted Dr. Julian De Lia in Milwaukee, head of The International Institute for the Treatment of Twin to Twin Transfusion Syndrome (tttsmd.com). Dr. De Lia suggested that I start a high protein regimen, yet I was so sick that it was difficult to keep down anything. I was vomiting almost every time I tried to eat. I was losing weight, but I kept trying to eat food that I could keep down. I found that peanut butter crackers worked, but only when eaten between midnight and two in the morning.
We decided that we had to go to Milwaukee. We contacted our doctor's office in Phoenix to let them know of our decision. For insurance purposes, we needed them to support our decision and we could not reach them. It wasn't until the next day that we spoke with someone at their office. We were running out of time. We had to be in Milwaukee before the next drain, and at the rate we were having them, it was only days away. One of the nurses told us that she would work with our insurance and the doctor to pull this all together. It was Friday and we needed to be in Milwaukee by Monday. There was a possibility that our insurance would not cover the surgery, but our decision was made. We were on a plane to Milwaukee on Sunday.
Upon arrival in Milwaukee my husband's aunt and uncle met us with open arms at the airport. It was such a comfort to have them with us being so far from home. We decided to stay in a hotel and the next morning check into St. Joseph's Regional Medical Center. We contact Dr. De Lia to let him know we had arrived. He told us that he would pick us up on his way to work the next morning. We were so touched by his kindness; we knew we were in good hands.
The next morning, Dr. De Lia picked us up at 7:00 am and as we were getting into his car, my cell phone rang. Our insurance company had received the documentation they needed from Phoenix Perinatal and were going to cover the cost of the surgery and our hospital stay in Milwaukee! Relief swept over me and I cried as I told my husband the news.
We were fortunate enough to get a hospital room with two beds and Scott was allowed to stay with me the entire time. The procedure was scheduled for the next afternoon. I was prepped and wheeled into surgery on July 2, 2002. So many thoughts filled my mind. I was absolutely terrified of what might happen. While we knew this surgery was the best thing to do for our babies, we were also aware it could end the lives of them both. At this point, we could only rely on our faith in God and trusted that His will be done. We had so many people praying for us all over the United States and even a few churches overseas. The last thing I remember is Dr. De Lia asking me to roll towards him so they could prop me up. I felt comforted by his touch.
The surgery lasted approximately 40 minutes. When I awoke, Scott and Dr. De Lia were there and were both smiling. The surgery had gone well. I was so relieved, yet I knew our battle was far from over. I spent the next 4 days in the hospital for observation during which time I got a surprise visit. My aunt and uncle from Indiana drove 8 hours to see me. It was so amazing. We were surrounded by so many loving friends and family members.
I had a posterior placenta. Dr. De Lia makes a small incision to be able to have full view of the placenta and do the surgery quickly. The incision is about 3 inches long and if it were appropriate for me to show it off, I would. That small scar that I will have the rest of my life is the reason our twins are healthy and alive! When it became clear to us that the only way we were going to save our babies lives, was to have the surgery, they could have removed my right arm and we would have been fine with that.
If any of you have ever flown into Phoenix in July, you know how turbulent it can be. We were flying in at the beginning of a monsoon storm and it became very bumpy. I was getting sick and started having contractions. Upon arrival, I headed straight for a restroom and found that I was actually spotting. My husband called our doctor and we drove directly to the hospital from the airport.
I was devastated. We had gone through so much to save our babies and I knew we had to get my contractions under control. I was missing my older children desperately. My best friend and her fiancée' were watching them and brought them to the hospital. I could tell they were scared. I reassured them that we would be OK. I stayed in the hospital for a week. Determined to get home to my family, I did exactly as the doctors instructed. I was still having 6 contractions an hour when I was released from the hospital. I took medication every 4 hours and wore a monitor that registered my contractions from home.
I began to feel better and was confident I would carry my babies to term. The doctors had warded us at the begging that if things got too bad for the babies inside my womb, that they would stand a better chance being delivered. We were told that we had to get to 24 weeks, even though their chances of surviving then were less than 20%.
I was home for exactly one week when my water broke. I was 26 weeks and I remembered reading that the odds for babies this early were only 50/50. I hugged my older kids and kissed them. Through my tears I told them that I loved them, I couldn't say anymore…I didn't want to explain what was happening. My husband and I headed for the hospital once again. I was given Terbutaline and Magnesium Sulfate to control the contractions. The doctors told us that as long as I didn't develop an infection, they were not going to deliver the babies. I had never heard of doing this before, but I was assured that is was safe for me and my babies.
I was scared. I missed my children terribly. I felt alone. It was hard to be by myself at the hospital. I had to take care of me and focus on saving my babies. I lived for the nights that my boys would visit, but when they left, it felt as if my heart was being ripped out of my chest. I broke down in tears every time the door shut and they were gone. I didn't know how long I could continue to watch them go.
Twelve days later, an infection was detected. Trevor Scott (2 pounds, 1 ounce) and Connor Lee (2 pounds, 6 ounces) were born on August 4, 2003 at 3:31 and 3:32 p.m. at 27 weeks and 5 days along. I was only able to se them for a brief moment before two teams of doctors and nurses rushed them out of the delivery room. We knew the reputation of the nurses and staff in the NICU at Good Samaritan. They were very supportive and caring. We trusted them with all our hearts.
Our babies stayed in the hospital for 8 weeks. They were so frail and so vulnerable; we never knew what we'd be walking into when we came to visit. We ended an extremely difficult pregnancy only to go on an exhausting NICU roller coaster ride.
But, it was completely worth it. Trevor and Connor just celebrated their 1 year birthday. Trevor weights 16 pounds, 14 ounces and Connor is 18 pounds, 5 ounces. They are crawling, smiling, saying 'mama' and 'daddy', are getting into things they shouldn't and keeping us very busy. Their pediatrician is amazed by how well they are doing and has no concerns about their health, physically or mentally. I am truly blessed. It has been an amazing journey.
I want the world to know that we fought this syndrome and won! We still keep in touch with Dr. De Lia and we plan to someday make a trip back to Milwaukee, so that we can introduce our babies to the man that saved their lives.