Our Story - The Extended Version

I have been meaning to post this under the "Our Story" tab for some time, but I don't know how to put it there without posting it on the blog. I know some of you have started reading after the boys were born and for those of you who have been reading all along, we never went into too many details of the night the boys were born. This is our story...the long version. 

On February 10, 2011 we found out we were having twins. We had known we were pregnant for a little bit and had been anxiously awaiting our first appointment to see our baby for the first time. Little did we know what a surprise we were in for! Nothing about our pregnancy was routine, normal, or easy.

I remember laying on the ultrasound table and our Dr was looking at the screen and I heard her say “oh, girl...you are having twins”. I just remember looking at Danny and starting to cry. We were just in complete shock. She asked me if I had any questions and all I could manage to utter was “Well, now what do I do?” We had been intending to keep our pregnancy a secret until we reached the 12 week mark but once we found out it was twins we just couldn't keep it to ourselves. We walked around for days and weeks looking at each other and saying “twins!?”.

Eventually the shock wore off and we were so excited about having twins. While I thought it would have been really fun to dress up twin girls, I knew all along that we were having boys. My mom and all of her sisters each had two boys as their first children. We are a pretty boy heavy family so I just figured our twins would be boys as well.

We laid in bed at night and talked about what it would be like to have two babies. Two brothers. Would they really be identical? Would we be able to tell them apart? Would they play tricks on our family and friends? Would they like sports? We wondered how we would fit two babies in our small house and how we would afford the mass amount of diapers that they were sure to go through.

Most of the memories I have of my pregnancy were ones of fear, wonder, and concern. Our first appointment was probably the best one that we had. In early March, around 12 weeks, we went in for a special ultrasound called a nuchal translucency scan that looks at the amount of fluid in the back of the baby's neck. Cohen's test came back abnormal which they told us could be an indicator for genetic abnormalities or structural defects. We were told since we were so young and healthy that the chances for a genetic problem was low but that he may have some kind of cardiac defect. We were sent down to UW to see a genetic specialist. Little did we know that this would be the first of many trips to Seattle. We met with the specialist, who ended up being one of the doctors who took care of me in the hospital. The days between the test results and our appointment at UW were really hard. I tried not to let my mind wander or imagine any worse case scenarios. I remember that this happened the week that we announced our pregnancy to our Sunday School class at church. After class I asked to talk to my pastor's wife and I just remember crying and crying over the possibility that something could be wrong with my babies. This was the beginning of the difficulties that we faced with our boys.

We went down to UW and were reassured that the likelihood of something actually being wrong was fairly low. We were offered more testing but we weren't promised any concrete results because of the fact that they boys were identical twins and shared a placenta. We agreed that the risks of further testing outweighed the benefits, it wouldn't change the care we received, and wouldn't change our minds that we wanted to keep both of our babies no matter what. We left feeling better but still having a small amount of concern in the back of our minds.

In mid March we went on a vacation to Maui that we had been planning with our friends since the winter before. I asked my OB over and over if they were sure that it was safe for me to go and they reassured me that it was. Several days before we left I started having some pain on my right side and around to my back. I called the Drs office before I left just to make sure that this wasn't anything they were concerned about. They weren't and I didn't think much else of it and off we went. The first few days of Maui were great and then the pain started to get worse. I could be up and around for about 15 minutes before I would have to crawl into bed and lay down. I did my best to enjoy myself, afterall this was going to be our last vacation for quite some time. The day before we left the pain had gotten so bad that I tried to stand up and I couldn't. Danny and some of my friends were very concerned and took me into the ER. I spent about 5 hours in the ER, no one checked on me and I was accused of having an anxiety problem. They suspected that I could have kidney stones but couldn't do any of the tests like they normally would because of the pregnancy. They also did a quick ultrasound to make sure that the boys were okay and they were. That alone was worth going in for. I was desperate to get home thinking that somehow that would fix it. I was scheduled to open at work the Monday we got back and I figured I would fine in a few days. I went into work that morning and made it for about half an hour before I had to crawl onto one of our stretchers and lay there and wait for the appointment I had scheduled with my OB for later in the day. The babies still looked fine at the appointment and they suspected either kidney stones or that I just grew so fast that my body couldn't quite keep up. I was told to go home and take the rest of the week off. After a few days rest and several gallons of water, I was feeling quite better.

The next few weeks we worked on a lot of projects around the house to get things ready before I wouldn't be able to help out. Things were sort of uneventful for a few weeks and then we went in for our 20 week appointment. I had been having some contractions but knew I had an appointment the next day so I figured I would talk to my OB about it then. This was the appointment when we found out that my cervix had started shortening and that they suspected the boys had twin to twin transfusion. We were sent back down to UW to meet with a high risk perinatologist who would become our Dr while we were in the hospital and would eventually deliver the boys. I was told that I couldn't work anymore and was put on bedrest. At this point we were nervous but still trying to be optimistic.

Bedrest was incredibly hard for me. As a nurse, I am used to being busy and always working on at least 3 different things at a time. Bedrest also gives you way too much time to think. I remember laying in bed and feeling the contractions and just getting more and more worried. After what seemed like an eternity, we went down for our appointment at UW. We got some good news in that my cervix hadn't changed any more and that the boys still looked okay. However, we were given a lot of worst case scenarios and told that we needed to start thinking about what we wanted to do should our babies be born at 23 weeks. Babies aren't considered “viable” until this point. Suddenly we were faced with the responsibility of possibly having to decide whether our babies lived or died. The outcomes for 23 week babies aren't great. We were told there was a 50/50 chance of survival and a 90% chance they would have significant problems. But how you decide that you don't want everything done for your children? We hoped and prayed that we wouldn't be faced with these decisions. This was the first of several heartbreaking conversations about what we wanted done for our babies over the next few weeks. During these weeks on bedrest, I told Danny that I wanted to pick names for the boys. I wanted my babies to have names and be known by them.

May 18^th, 22 weeks along, we went in for our weekly appointment, and we were told to go home and pack some things and drive down to Seattle to be admitted to the hospital. I had been having a significant amount of contractions, every few minutes, and my cervix had dilated more. I remember laying in the OB office as my Dr called down to Seattle and told them what was going on. I remember crying and crying, filled with fear over what was happening with my babies. My mom had driven me in to the appointment since Danny had been at work and was meeting us there. The 30 minute drive home to pack up our things was the longest drive of my life. I came into the house and fell into my bed and sobbed as Danny packed up our things. I told him I wasn't going. I was so afraid of what was going to happen. Deep down in my heart, I knew that things weren't going to turn out how I wanted.

The two hour drive to Seattle was even worse than the drive home to pack up our things. I continued to cry and cry. I cried for my boys and for the unknown. All I wanted was for them to be okay. I wanted my body to cooperate so that I could keep my babies safe. I felt so helpless knowing that there wasn't anything I could do to help them. I felt more and more anxious with each contraction that came and went.

We made it to UW and were admitted to the hospital. We again had to have the “your babies aren't viable, and if they make it to 23 weeks what do you want done?” talk. It was awful. Every time someone would come in and mention it I would cry through the whole conversation. It is so hard to want to protect your babies but to be completely helpless to do so. It is awful to feel your babies moving around and hear their heartbeats and see them waving on the ultrasound and then be told that if they were born that they wouldn't survive. We met with several neonatologists who gave us the statistics for if the boys were born at 23 weeks, 24 weeks, 25 weeks etc. None of it sounded promising. Our hearts were broken.

Over the next week I was started on Ibuprofen to try and help calm down the contractions. I continued to have regular contractions although they didn't seem to be changing my cervix very much. The Drs were again worried about the boys having twin to twin transfusion. With identical twins the babies share a placenta and the blood vessels that feed them. One baby acts as a donor twin and the other a recipient. While one baby receives the majority of the blood/fluid, the other receives a minimal amount. As the days went by I was monitored closely. Lots of different doctors and nurses came and went. Some woke me up in the middle of the night and demanded to check my cervix (twice). Some came in at midnight to tell me that I should let one of my babies die in hopes of giving the other a better chance at survival. Some nurses freaked out over my regular contractions even though I told them over and over that it was normal for me. Sometimes I remember the insensitive words and scary moments more than the calm moments although with the exception of a few experiences, we really were very well taken care of.

The majority of the days I spent in the hospital were filled with fear. With every contraction I felt like I was getting closer and closer to going into labor and there was nothing I could do to stop it. I worried when my regular nurses who knew me weren't there. I worried on the weekends when my regular Dr wasn't there. I did everything I could to pass the minutes so that I could go to sleep for the night and wake up and celebrate that I had made it one day closer to giving my babies a chance to survive. We counted down the days until we finally made it to 24 weeks. I spent my birthday in the hospital with my mom. Danny was driving back and forth twice a week and my mom would come stay with me when he couldn't be there. I am so thankful for both of them and the sacrifices they both made to be with me. I was terrified to be alone because I didn't want my babies to be born without their Dad. I was scared to be alone because I didn't know what was going to happen.

At the end of May I was taken over to Children's by ambulance to get an echocardiogram to look at the babies hearts since there had been some concern with the nuchal translucency scan that we had done early on. The only thing that showed up was a small calcium deposit on Cohen's heart which they were not concerned about.

Within the first 2 weeks of being in the hospital I had gained 10 lbs. We soon found out that this was a result of the twin to twin transfusion. Carter's swimming pool was getting bigger while Cohen's was getting smaller. I was so uncomfortable and so big from gaining the weight so fast. I didn't have room to eat anything and laying in my bed was miserable. I had a procedure done where they put a needle into my belly and drained out 2.5 liters of fluid. I couldn't believe when I saw how much fluid had come out of my belly, but it sure did explain why I was feeling so big and couldn't get comfortable. Prior to the procedure I had received my first steroid shot. The amnioreduction had the potential to put me into labor and so I was given the first of 2 steroid shots to help the babies lungs. I felt way better after they were done. Before the procedure I had gotten to the point where I was so big that I couldn't sit up because it was painful. I didn't want to go outside for my one field trip a day that I was allowed. I didn't want to eat because I didn't have room for anything. For a few days after the amnioreduction I felt way better. I wanted to eat and I wanted to go outside. But, soon the fluid started to return.

After what seemed like an eternity, we made it to 25 weeks. We were so happy that we had even made it that far. We had started to have daily non-stress tests to check on the babies and Carter's heart rate started to concern the doctors. He didn't have much variablity in his heart rate, which shows that he wasn't really responding to stress. He was having some periods where his heart rate would go a little low. Because they were concerned I had to be hooked up to the monitors overnight so that they could monitor the babies closely. This was the beginning of sleepless nights until the boys were born. Because the babies were so small, the nurses would spend up to an hour just trying to get both babies on the monitors. I would have to hold completely still and not move or the boys would come off the monitor and we would start the process over. The last few days before the boys were born I was so miserable. The fluid was coming back. I couldn't eat. I couldn't get comfortable and I couldn't sleep because of the constant monitoring. We continued to be fearful of what lay ahead of us for our boys.

On June 4t^h one of my waters broke. I was moved to labor and delivery and started on antibiotics and Magnesium (to help the babies brains, not to prevent labor). I was told that at this point they would not try and stop my labor. My Dr had told me that sometimes the babies tell us when they are ready to come out and it seemed like that was what was happening. Carter's heart rate continued to concern the doctors and they watched him closely. On June 5^th my second water broke. The doctors came in and did another ultrasound to look at the boys. At this point Carter was starting to look pretty sick and was starting to show fluid accumulating around his organs. They decided that it was time to deliver the boys. We were given the option to induce labor but we weren't guaranteed that the boys would survive labor. We decided that it would be best to go ahead with a C-section and get the boys out as quickly as possible. My regular doctor was called and she came in for the delivery. It was such a relief to see her face and to know that someone we knew and trusted would be delivering the boys.

As all this was going on, I remember having the strangest peace which I know only could have come from the Lord. I could tell Danny was scared and I found it weird that I was able to try and comfort him without completely falling apart. Earlier that day I had begged him not to leave. Since it was Sunday, he was going to head back up to go to work and my mom would have come down in the morning. Somehow, I knew that this was going to be the day that they boys would be born and so I begged him to stay with me. We called our parents and let them know that it was time. For a few brief moments while they were getting me ready for surgery, I was just calm. I wasn't scared or excited...just waiting to meet our boys.

I was taken back into the OR, given an epidural and prepped for surgery. I remember wishing that Danny could have been there with me but they wouldn't let him back until I was all ready. Finally they let him back and I was so glad to see him. It was time to meet our boys. I don't remember much about the surgery except for my Dr leaning over the curtain and telling me that Carter looked like he had really needed to come out. I didn't get to see either of the boys when they were born as they were whisked away to be worked on, like they needed to be. After what seemed like forever, one of the NICU doctors came in and leaned over me and told me that they had been working on Carter for 20 minutes and that he wasn't going to make it. I don't remember anyone ever telling me anything about Cohen. It's possible that they did, my memories of that night are blurry. I remember Danny going back to the infant resuscitation room to see Carter. He had to watch them work on our baby. He had to make the decision to tell them to stop, although Carter had already mostly made that decision for us. Looking back, we are thankful in that regard. He fought as hard as he could, but he was just too early and too sick. I remember crying like I have never cried before. I remember wondering how they were going to sew me up while I was crying so hard. At some point my mom and sister arrived at the hospital and Danny went out to tell them that Carter had died.

They finished sewing me up and as they were wheeling me out of the OR they brought Carter to me and put him in my arms. I was completely heartbroken. I couldn't believe he was gone. I just remember looking at him and thinking how perfect he looked. He looked like he was sleeping and at any moment that he was going to stretch and open his eyes. He never did. We were taken back to our room where we held Carter for quite some time, but it didn't seem like long enough. I just couldn't believe that this was happening. I couldn't believe my baby was gone. Just hours earlier I had seen him moving on the ultrasound. I had heard his heart beating on the monitor as they were getting me ready for surgery. And now I was faced with the reality that he was gone forever. We counted his fingers and toes. We commented on how he had his daddy's big feet. He looked so perfect. He had the tiniest little hands and fingernails and little round head. I didn't want to give him up. I wanted to keep him with me and protect him. I wanted so badly for it all to be a nightmare. I wanted to wake up and realize that none of it had happened. It was a nightmare, but I didn't wake up and it didn't go away.

Someone came to update us on Cohen and we were told that had a strong heart. We later found out that he was really sick. He was in kidney failure and his lungs were very premature. The doctors weren't terribly optimistic. In the midst of our pain over losing Carter we were also trying to deal with having a critically ill baby in the NICU. Our journey into parenthood was anything but happy. When you think about having a baby, this is not how you imagine it will go. We had big hopes and dreams for our boys that we won't get to see come true. Even though things didn't turn out how we wanted them to, we are so thankful for both of our boys and what little fighters they are/were. And that is the story of our twins, one in heaven and one on earth.