Sunday, February 8, 2009

Our Story

This week a woman that I work with at the Baker Food Co-op, told me that her friend had also lost twin girls to Twin to Twin Transfusion Syndrome. Her friend, Tracey has been so kind in sending emails with pictures and pieces of their story. I wrote her an email this weekend about our journey with the boys and our battle with TTTS. I thought I would post it here for anyone joining this blog without the background of what went wrong. It's long so only read what you want!

For David and I it was our first experience of pregnancy. I found I was pregnant a few weeks after our 4th wedding anniversary. We were stoked! I was in finals week, finishing my bachelors degree, David had just gotten a job and we had bought our first house. There was so much excitement!

We live in a rural community and I was nervous about this since we had just moved from Portland and I was already missing the larger city amenities such as health care. I made an appointment and was told that we would only have one ultra sound and it would be at 22 weeks. I was okay with this but being so new to being pregnant and so excited I was disappointed that I wouldn't get to see our little one sooner or more often. My husband and I had one appointment then we went off to Europe for a month. I grew out of all my clothes during our one month trip and was surprised. I didn't think I would even notice a little bump for several months. At 14 weeks we returned home and I was growing fast! My doctor thought things looked okay. I even joked about the Doppler he did, asking if he was sure that there was only one heart beat cause I thought my belly was big. He said only one heart beat. We went to Portland to see some friends and saw a girl who was about a month further along than I was and she still had a flat belly, I looked about 5 or 6 months pregnant at about 16 wks along. People were teasing me about having twins and I never once really thought it was possible. Two weeks later I was getting nervous about things not being normal. I was sure that I had an infection or was farther along. I called the DR and they said I was probably okay but they would let me have my ultra sound early. The night before my ultra sound I felt the baby kick, even David felt him. We were so surprised! I knew at that point I was much farther along and that would explain the size of my belly. We were floored to find two babies inside the next day! We laughed and laughed all the way home from the doctors office...all day we just couldn't believe it. They looked healthy and we felt so blessed to be parents of two at once! We had our apt with our DR since he didn't do the ultrasound and he told us there were two placentas and that was good since things like TTTS can happen when there is only one placenta. I had read about TTTS during the few days between my ultrasound and DR apt and was relieved that this wasn't something we would have to worry about. Since we live in a rural location we were referred to a specialist 2 hours away for the following week.

We went to the appointment the next week to hear our worst nightmare. There was only one placenta and we were in the early stages of TTTS. How could this be...last week we were told that we wouldn't have to worry about TTTS specifically! We were again shocked. We were referred to DR Walker in Seattle for the laser surgery that week. We drove home and I cried the whole 2 hours. We had dinner with both our parents and devised a plan for the next day. We took off with my mom and the three of us made the 8 hour drive to Seattle. I was seen Wednesday morning and the surgery was scheduled for Friday morning. I was so nervous but we were so hopeful. I'm sure you know but we were told that 90% of the time one baby makes it and 70% both babies. Surely we thought the numbers could be in our favor this time. The surgery went well and after the long night of waiting to see if the boys made it through the night we could breath again when we saw two heart beats. During the surgery I was awake and David held my hand. We saw both boys by camera, I had met my children in the operating room and at that point I had never wanted anything so badly in my life. I pleaded with God, I knew these precious boys would have such a story to tell when they grew up. I wanted to have the honor of being their mother. Please God, please.

I was on bed rest just to recover from the procedure and would then continue weekly appointments with our specialist. They had drained a liter and a half during the process and my back pain wasn't so sever. I started eating as much protein as I could and I was pleased with myself every time I met the 176grams at the end of the day. I was gaining proper weight and was thinking positive about bed rest. Our first appointment after the surgery went okay. There wasn't much progress with the boys but nothing negative either. Their fluid levels had evened out, but the stress that their hearts were under hadn't improved. We thought we just needed some more time. My cervix had lost about 1 cm and was "beaking" . They didn't seem too concerned so I stayed on bed rest and continued with the diet. I had a couple of nights that the contractions had gotten alittle rough so I took the proper amount of terbutaline they recommended. It was time for our 2nd week apt and we felt good about things. The boy's condition looked slightly worse but we didn't understand what it all meant. Then they checked my cervix, it was gone and starting to open. I was starting early term labor and was once again shocked. Due to the intrusion to the uterus along with the dimming condition of the boys my body was doing what was only normal when things aren't healthy. We were admitted to the hospital to see what they could do. 24 hours after being on the highest does of terbutaline and some other muscle relaxant, the contractions continued. We started to realize the dimness of our situation. The next morning I was wheeled to labor and delivery and after 13 hours Quintin was born. He was laid on my chest alive but not moving. The tears started. Five minuets later Speedy was born. There on my broken heart they lay, both boys alive, but only for a short time. Speedy was making some noises and moving his arms and legs. He was the recipient baby, and his heart was very enlarged. He grabbed Davids finger and held on. We wept.

We spent the hour of their short lives with both our parents and two of my sisters and one brother in-law. At times it was overwhelming and we would ask them to leave our room periodically throughout the day, but I am so thankful they were there. It’s been seven weeks now and I feel that I am healing. The pain of coming home empty handed has been a journey. I still haven’t put the baby things away, but they are at least all in the bedroom we were setting up as the nursery.

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