Jana

Mom to Carter Garen

Born and died on June 5, 2011

Lynden, Washington

 

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 doctor was looking at the screen and I heard her say, “Oh, girl…you are having twins.” I just remember looking at my husband 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 thinking and saying, “Twins?!”

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. Baby A’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 were low, but that he may have some kind of cardiac defect. We were sent down to University of Washington (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. 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.

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 dilating 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 doctor 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 gives you way too much time to think. I remember lying 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 anymore 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.

May 18th, at 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 number of contractions, every few minutes, and my cervix had dilated more. I remember lying in the OB office as my doctor 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 the hospital 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 the hospital and 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.

I continued to have regular contractions, although they didn’t seem to be changing my cervix very much. The doctors were again worried about the boys having twin to twin transfusion. 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. 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 doctor 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 from Lynden 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.

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. Baby B’s swimming pool was getting bigger while Baby A’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 lying 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 it 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 amnio reduction had the potential to put me into labor, and so I was given the first of two 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 amnio reduction I felt way better. 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 variability 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 4th, one of my waters broke. I was moved to L&D and I was told that at this point they would not try to stop my labor. My doctor 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. Baby B’s heart rate continued to concern the doctors, and they watched him closely. On June 5th, my second water broke. The doctors came in and did another ultrasound to look at the boys. At this point Baby B 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.

I was taken back into the OR, given an epidural and prepped for surgery. I don’t remember much about the surgery except for my doctor leaning over the curtain and telling me that Carter looked like he had really needed to come out. 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, but my memories of that night are blurry. I remember my husband 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. I remember crying like I have never cried before, from somewhere so deep down in my soul. 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.

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.

In the midst of our pain over losing Carter we were also trying to deal with his critically ill brother 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 will never get to see come true.

We miss Carter every single day. We think about him all of the time. We can’t wait until we get to tell Cohen all about his brother. We are choosing to believe that in the midst of our heartache and joy that God will use our story for something greater. Even though we didn’t get to keep our son here on earth, we look forward to seeing him again someday in Heaven. Thank you for reading our story.

Jana blogs at kimmeldoubletrouble.blogspot.com.

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Comments

  1. T. says:

    Is the link to the blog wrong? Im interested in reading it.

  2. Kayce Butler says:

    Jana,
    First I am so sorry for your loss. Your story really touched me because it was so similar to my own. I was pregnant with triplet boys. I made it to 26 weeks and then one of my sons died in utero. The other two were born so very tiny. My son Brady lived for 5 months and passed away and my son Braxton thrived and is now a happy and healthy four year old. I understand so much the conflict of joy over one baby and grief over the loss of another. When you prepare for multiples and then come home without them all you just can’t believe it. It took me months to take down the other cribs. Hugs and prayers for you and your husband.

  3. Jana says:

    Yes, the website is wrong! It should be kimmeldoubletrouble.blogspot.com

    Thank you for your interest :) And Kayce, I’m sorry for your loss as well. I couldn’t take down our extra crib. I had a close family friend go and take it down before we brought our son home from the NICU. I think you grieve not only the loss of a child but the loss of “the twins” or “the triplets”

  4. Danelle says:

    Hello Jana,
    My name is Danelle. I am so sorry about the loss of Carter. I too can relate to your story. I gave birth to triplets at 23 weeks on June 2, 2010. I had two boys and one girl. My little girl, Gemma, is the only one living today. I am so blessed to have her in my life but I will never be the same. My daughter is now 19 months old and it’s hard because as she gets older I wonder more and more what the boys would be like. At least I have a little part of them in her.

  5. JoAnna says:

    Jana,
    I am so sorry for the loss of Carter. My sons Nathan “Baby A, and donor baby” and Tyler”Baby B” had twin to twin too. They discovered it fairly early on, but Nathan while always a good deal smaller continued to grow and have adequate amniotic fluid. So our OB never intervened surgically. I developed Pre Eclampsia at 27 weeks and delivered at 29 weeks. Nathan was more than a pound smaller than Tyler. Both boys were actually doing well and at 14 days Nathan developed a a condition called Necrotizing enterocolitis. It usually affects the smallest preemies, and because of the Twin to Twin he was tiny. He fought hard for 2 days days but passed away due to complications. Tyler is now a healthy 2 year old, that I am more thankful for than words can say. Part of me knows it’s a blessing that I get to look into his and what would have been Nathan’s face too, but there are days when it seems like a cruel joke. Not really feeling like our family fits anywhere is very hard at times, being on an emotional roller coaster of happiness and sadness, for what I assume will be the rest of my life, is miserable. I mourn not only for myself, but for Tyler. I’m still the mother of twins, and of an angel. I wish things had work out differently for us both.

  6. Paige Rebecca says:

    im so sorry for your loss,
    ive lost two babies):
    i know how you feel

  7. a little honey says:

    Jana, thank you so much for sharing your story. I lost both of my twin boys to TTTS and have found so few stories that mirror my experience. You are brave to write, and in fact, this is my first comment/post on any of the many sites that I frequent now as I process this grief.

    At 18 weeks, the TTTS was officially diagnosed and was already Stage 3. We had hoped to be able to do anything and everything possible to save both boys but our prognosis was not good. My cervix was already thinning quite a bit and the doctors strongly recommended that we reduce to try and save one of the boys. That grief of losing Baby B felt heavy and terrible until…

    At 22 weeks, I went into preterm labor at lost our baby boy (Baby A) on October 27th, 2013.

    We had ideas for both of their names but now can’t even bear to speak those names aloud. It’s been almost three months and some things have gotten easier – I am back at work, etc – but the depths of this grief are only starting to become clear. We want to try again but don’t know how long to wait.

    Thanks again for sharing your story, and for listening to mine.

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