After being married for a year and a half, my husband Joey and I decided it was time to try to have a baby. In November 2010 we found out we were expecting after getting a positive result on a home pregnancy test. We were thrilled! We always wanted a family, we both loved kids, and we were excited to start this journey.
At 6 weeks pregnant, I went in for my first OB appointment and had an ultrasound. My OB preferred to perform an ultrasound to get accurate dating and make sure everything is healthy. That was when we saw not one, but two little heartbeats. I panicked, it was completely unexpected and I was scared to death! My husband was thrilled, he couldn’t stop laughing and saying things like, “This is the best news!” It took me a couple days to fully accept and let the shock wear off, but once it did, we were all completely ecstatic.
6 week ultrasound.
My OB did another ultrasound at 8 weeks to make sure things were progressing well. He then did another ultrasound at 10 weeks, and that was when he told me, the babies each had their own placenta. We were not at risk for any major complications and this should be a normal, healthy twin pregnancy. That was a relief! I had an appointment at 12 weeks, but we just listened to the heartbeats, there was no ultrasound. I had another appointment at 16 weeks, but we again just listened to the heartbeats and did not do an ultrasound. My next appointment was scheduled for 20 weeks 5 days. That would be the big, in-depth anatomy ultrasound.
At 16 weeks, the swelling began. I got noticeably bigger every single day. I would wake up in the morning and look in the mirror and could clearly see that my belly was definitely bigger than the day before. My belly was extremely tight and hard and hurt constantly. My back muscles were in constant spasms. I couldn’t stop taking Tylenol for the pain, covered my back in Icy Hot and slept with a heating pad. By 19 weeks, I wasn’t sleeping at all, I would sit in bed and cry from the pain, I didn’t know how I was supposed to do this for four more months. We all just assumed carrying twins was really hard. Since this was my first pregnancy, I just thought the pain was normal and something I would have to deal with.
My husband and I decided we were too impatient to wait until the anatomy ultrasound with my OB to find out the gender of our twins, so at 18 weeks we scheduled an appointment with a fun, 3D/4D ultrasound location. We invited our parents and they performed an ultrasound to find out gender. While there, we were told, they were both girls!!! We were thrilled!! During the ultrasound we all laughed and noticed how active Baby A was and how Baby B just sat there. Content to have her legs curled up into her chest while her sister flipped and kicked and floated all around. We decided that they must have different personalities already. In the two weeks after that ultrasound and before our next one, my husband made the comment, “I hope Baby B is alright, she was just sitting there, so still….” I told him, her heartrate was great, she’s just fine, don’t worry. We chose names for our little girls, Baby A was Eden, Baby B was Noelle.
Daddy is excited to have two princesses!
At 20 weeks 5 days pregnant, on March 1st 2011, we went in for our big, anatomy ultrasound with the OB. The ultrasound technician started with Eden, Baby A. When she began, I noticed that still, Noelle was curled up at the top, not moving, while Eden flipped and flailed around. It concerned me, but I told myself everything was fine. The ultrasound tech measured everything on Eden and had glowing things to say about her. She pointed out all of her major organs to me, stomach, kidneys, bladder, etc. And we smiled and laughed while she did flips. When she finished with Eden she let me get up and walk around a bit, since I was still in so much pain from the swelling, while she entered all the numbers and measurements she had gotten into a document on her computer. Then, it was Noelle’s turn. This time, the technician was silent. She took measurements and seemed to do all the same things she had done with Eden, but she never said a word. I laid there, in the silence, and again told myself, everything was fine. I told myself, we had already been through this with Eden, how redundant to have to repeat everything again! She probably just wants to get finished with this ultrasound and move on. She finished with Noelle and again entered all the stats and numbers into the document on her computer. We went and got Joey from the waiting room and brought him in. She did another quick ultrasound to let him see the babies. During this, I asked her, “With one moving around so much and the other just sitting there, is that normal?” Her response was, “That’s common with twins. The doctor will be in soon to talk to you about how they’re growing.” My heart dropped. I knew that was a bad answer. I didn’t ask about how they’re growing, why did she add that comment in there? When she left the room to get the doctor, I told Joey, I didn’t like that answer.
A radiologist came in, introduced himself, and first went over to the computer to review the document where the technician had entered all the numbers and stats. I looked over his shoulder and the only thing that my eyes caught was “Baby B CRL GA 18.1 weeks”. I knew what that meant. Baby B’s Crown to Rump Length was measuring at a Gestational Age of 18.1 weeks. I was 20.5 weeks along. That was when I stopped telling myself everything was fine.
The radiologist started the ultrasound himself. For about 10 minutes, he looked at a lot of different things and whispered with the ultrasound technician. Those 10 minutes, I stared at the ceiling, I can still picture the ceiling tiles to this day, and I told God, “I will still trust You. I will not be mad at You. I trust You. I trust You…” over and over. The radiologist finished the ultrasound and said, “We have a serious problem.” I suddenly got really hot and could feel my heart pounding out of my chest. Joey said he felt like he got punched in the stomach. We stared at him and listened.
He began to explain Twin-to-Twin Transfusion Syndrome. He told me the babies were sharing one placenta, I told him my OB said there were two, he said my OB was wrong. He explained what was happening, Baby A was receiving too much blood and thus creating too much amniotic fluid, while Baby B was not receiving enough blood, was very growth restricted, and had almost no amniotic fluid. He told me that Baby B would die soon, and would probably be followed by Baby A. He said one option that doctors would suggest is selective reduction (abortion) of Baby A to give Baby B a chance to survive. We immediately told him no. He responded that he simply wanted us to be informed. I asked him if there was any hope for them to both survive and his response was, “I’ve seen it all.” My translation of that was, “You will need an absolute miracle from God for them to both survive. But medically and practically speaking, no. There is no chance for them to both survive.”
We left the ultrasound room and I completely broke down. I sobbed on my husband’s shoulder in the hallway and we slowly made our way to the OB office. The radiologist would be faxing the information from the ultrasound to my OB and would have to wait a few minutes to see him. When we got up to the OB office, I saw one of the nurses that was always so sweet and friendly to me. She smiled and waved at me, and then noticed my red, splotchy, swollen face. She asked what was wrong and I told her, something was wrong with the babies. She took me straight back to a room so that I wouldn’t have to wait out in the general waiting room. It was the most meaningful gesture in that moment.
The OB came in and didn’t have much to say. He seemed very upset and disheartened. He told me he would be referring me to a group of perinatologists that he works closely with. He said once they see me, they may be able to give me more options. He mentioned a surgery to “change” the blood flow in the placenta and another surgery to remove the extra amniotic fluid. He said he wasn’t sure if either of those would be options for us, but the perinatologists would know. We asked him point-blank what he thought was going to happen. He would only say, “I’m very worried.”
We went home, made a lot of phone calls, and told everyone the news. We received a flood of phone calls, texts, and Facebook messages from people telling us that they were praying for us and encouraging us. It helped strengthen us so much. We both just felt emotionally exhausted and completely fatigued. My husband said, “No matter what happens, right now, we have two little girls.” That helped me to cling to the moment, RIGHT NOW I have two living daughters. Regardless of what happens, we have right now.
The next day, I stayed home from work, and woke up refreshed and ready to do something. I first called the perinatologist group that my OB had referred me to. Initially, my OB told me to wait for them to call me, but I wasn’t comfortable with waiting. They scheduled me for an appointment in two days. I wasn’t satisfied with that, I really felt strongly about seeing a specialist THAT DAY and not wasting time. So I started searching for information about TTTS online. Almost immediately, I stumbled across Dr. Kenneth Moise’s information. I lived in Houston and he practiced in Houston. There was a lot of information about TTTS treatment on his website, so I decided to just call the phone number on there. I told the woman on the phone that I had just been diagnosed with TTTS and I was looking for information. She connected me with Karen Moise, Dr. Moise’s wife and nurse coordinator. Karen spent about an hour on the phone with me, explaining the disease and all the treatment options in depth. I finally felt like I understood what was happening to my babies. When I told her I lived in Houston, she told me to have my OB fax over my medical records and they would be able to see me that afternoon. I was so excited and encouraged!
I called my OB and told him I wanted to see Dr. Moise and he needed to fax my records. He told me that he preferred for me to see the perinatologists that he had already referred me to, the group that could not see me for two days. I told him no, that I was not comfortable with waiting and I wanted to see Dr. Moise today. He reluctantly sent my records and about an hour later, Karen Moise called asking me to be there ASAP.
I arrived and had the longest ultrasound ever. They were very in-depth and measured every tiny thing on both babies. Throughout the ultrasound, different doctors, nurses, technicians, specialists, residents, and everyone else came in and out, introducing themselves, asking me a few questions, taking notes, and leaving. Eventually, Karen Moise came in and said, “Do you believe in angels?” I was a little taken aback and answered, “Um, yes…” She said, “You have one powerful guardian angel. You just called us this morning, now you’re here, and now, the doctors want to do surgery first thing tomorrow morning.” My husband was shocked and a little shaken up at us having surgery the next day, but I felt very excited and encouraged. If there was a problem, I wanted it fixed, immediately. We went and sat with Dr. Moise while he explained everything that would happen during surgery, the risks, and what to expect. We were officially diagnosed with Stage 3 TTTS, with Eden, our recipient, at 18 cm of fluid while Noelle, our donor, was shrink-wrapped with no fluid.
We experienced a whirlwind of emotions. Not 24 hours earlier, we thought we had two perfectly healthy little girls. We went from that, to being told they were both going to die, to now being prepared for surgery to save their lives. In a way, looking back, I am grateful for how quickly and suddenly everything happened. We had no time to worry, only a short time to act. In the coming weeks, the reality of what had happened would begin to set in.
The next morning, March 3rd, at exactly 21 weeks pregnant, we arrived at the hospital at 6:30 a.m. I got checked in and prepped for surgery. My surgery began at 9:00 a.m. I drifted in and out of a dreamy state and did my best to listen and follow along with the surgery. I could hear every time they turned on the laser and even felt the “pop” of them lasering closed each vessel that the girls shared. Periodically, I heard a nurse check each baby’s heartrate and announce it. Every time I heard that, I breathed a little sigh of relief. I listened while they drained 2.5 liters of excess fluid out of Eden’s sac and then finished up the surgery. Once it was over, I was in a lot of pain. The doctors said I was contracting and that was causing a lot of the pain. While in Recovery, the nurse gave me a shot of Terbutaline to stop my contractions and ease the pain. A couple hours later I was taken to my room and stayed the night in the hospital.
Photos taken during surgery.
The next morning, around 7:00 a.m., I had my first ultrasound. We saw both babies’ heartbeats and could see that Noelle already had more fluid, was stretched out, and moving around. I can’t remember ever feeling happier in my life. I kept thinking about my sweet little girl, being so cramped and squished for weeks, finally feeling better and being able to move. I was discharged and immediately headed over to Dr. Moise’s office for an in-depth ultrasound to check on things post-surgery. It was amazing to lay there and not be in constant pain. My stomach had shrunk significantly and I was so much more comfortable. The ultrasound looked good, it would take a couple weeks for things to really improve a lot and things were still very delicate. But again, at that moment, we still had two living daughters and that was all that mattered.
The bandage from surgery is always cut into the shape of a heart. There are no words to describe the emotions of that moment, when I lifted my gown a few hours after surgery to look at the incision site, and see that heart.
I spent the next week on strict bedrest at home, then headed back to see Dr. Moise for my one-week-post-op ultrasound. Things looked great. Noelle had even more fluid, her bladder was visible, and both girls were healthy. We were overwhelmed. We felt that we had been spared, and we didn’t know or understand why, but we were so very grateful. From there, we continued to see Dr. Moise once a week for 8 more weeks, and when I reached 30 weeks, I began to see him twice a week. Every checkup was perfect. We did discover that Eden’s heart was enlarged, but after an Echocardiogram it was determined that it was functioning perfectly and would resolve itself eventually. Noelle was still measuring two weeks behind in growth, but that discrepancy was not getting larger, an indication that she was growing at a healthy rate. We began to breathe easy and prepare for the arrival of our two little girls.
29 weeks. Surgery scar in the middle of my belly.
At 32 weeks 1 day pregnant, during an ultrasound, Noelle failed her BioPhysical Profile by not doing her practice breathing. Dr. Moise ordered a Non-Stress Test and after about a half hour he was still not satisfied with what he was seeing from the girls. He decided I needed to check in to Labor and Delivery, be on constant monitoring for 24 hours, and receive steroid shots to boost the girls’ lungs. It looked like we were going to be having babies soon! I got settled in a room, hooked up to the monitors and received my first dose of steroids. It was hard sleeping through the night and getting comfortable with the monitors on, but by morning it was decided that the girls were doing perfectly. I had a couple of ultrasounds, received the second round of steroids and wore the monitors every couple of hours, just to make sure things were still okay. After three days, I was discharged. It appeared to be a false alarm, but I was encouraged to know that I had received steroids so my babies were prepared to be born, if they needed to be.
One week later, at 33 weeks 1 day, during an ultrasound, Eden failed her BioPhysical Profile by not moving around enough. Another Non-Stress Test was ordered and again, Dr. Moise was not pleased with the results. This time he said, “We need to get the heck out of Dodge.” We had beaten the odds, he told us. The babies would spend some time in the NICU, but only as feeders and growers. It was time.
On May 27, 2011 at 5:31 p.m. Eden Allison was born weighing 4 lbs 13 oz and 18 inches long. And at 5:32 p.m. Noelle Kathryn was born weighing 3 lbs even and 15 inches long. Both were breathing on their own and scored 8s and 9s on their APGARS. They were perfect.
They spent 24 hours in the Level 3 NICU before being moved down to the Level 2 NICU. They had head ultrasounds, Echocardiograms, and many other tests done, all came back perfect. After 18 days, Eden was discharged and after 33 days, Noelle was discharged. Both spent that NICU time gaining weight and learning how to drink from the bottle.
Today they are 20 months old and perfect in every way. They are beautiful, intelligent, delightful little girls that light up our lives and fill us with joy. Noelle is still a couple pounds lighter than Eden but besides that, there is no evidence of what they went through to come into this world.
Not a day goes by that I don’t think about how close we came to losing them. My TTTS had been occurring for weeks before it was discovered. How they were still alive at that point, is incomprehensible to me. I know how close we came to losing them and I do not take that lightly. I work every day to educate others about the risks of monochorionic twin pregnancies and the threat of TTTS. I don’t know why we were spared, when so many others are not. I will never know. All I can do is pay it forward and help as many people as I can be spared this awful disease.
Noelle and Eden-17 months old