Losing Little Bean.

A year and a day after we found out we were pregnant with Carter, we found out we were pregnant again. March 8th. I had known for a while, but we didn't get a positive pregnancy test until that day. It was the best day we'd had in a long time. And we were finally getting another chance to bring home a baby.

Everything was really good for a long time. We had an ultrasound at six weeks, then another at seven weeks, and another at eight weeks, not because anything was wrong, but because we wanted one early, and then our doctor was so nice and did one each time we saw him. We got to watch our bean grow from a tiny little dot on the ultrasound until she looked like an actual baby, and it was wonderful. I don't know how many doctors allow their patients to have eight ultrasounds by the time they are 14 weeks, but if yours does, I highly recommend it.

The first trimester was, like Carter's, a dream. I was more nauseous than I was with Carter, and food didn't seem to help, but I still never threw up! Sleep was hard to come by, but I wasn't as tired as I was with Carter, so it seemed like a fair trade. We were in Amsterdam right during the thick of my sickness, so that was a fun thing to deal with. But it didn't really matter, because I was so happy just to be pregnant again. And with this pregnancy, unlike Carter's, I craved sweets all the time. Fruits and vegetables made me want to throw up, so I just ate a lot of breads and chocolates and cookies, and already little bean and I were the best of friends.

Two Tuesdays ago, May 9th, I woke up and thought I had leaked fluid. We hurried to the ER (where they, of course, didn't hurry) and waited to have an ultrasound. When we finally got in there, the tech told us that the baby's fluid looked like, so Brandon and I relaxed, and enjoyed being able to see our wiggly little babe. She was so wiggly, just like Carter. We went back to our room and waited for the doctor to discharge us. He came back in with the nurses and sat down, and told us that the fluid levels looked fine (I just peed my pants, no big deal), but that there was something else we needed to talk about. He told us that the baby had what is called a Cystic Hygroma. He told us it was abnormal growth on the brain, and that we were going to lose the baby. We were devastated, and kind of blindsided. Everything had been fine, and we'd just had an ultrasound six days before and our doctor didn't see anything, so we had no idea where this was coming from. We went in to see our OB the next day, and he was just as frustrated as we were. He said the radiologist didn't tell him where the growth was, or how big it is, and furthermore, the ER doctor hadn't exactly given us accurate information. A Cystic Hygroma is abnormal swelling of the lymphatic system, and while it can be fatal, it can sometimes go away too. He did an ultrasound that day and said that he could maybe see what they had been looking at, but that he couldn't confirm it. We had gotten my blood drawn the week before to do DNA testing on the baby, so he said we would need to wait for that to come back before we drew any conclusions or made any plans.

That same night, he called us and said he had our results, and that he wanted to see us first thing the next day. All night we worried and talked about worst case scenarios. We sat around the house for too long, then finally left and drove around for about three hours before coming home and crashing on the couch. When Thursday morning finally came, we went to his office and waited. Our results showed that the baby had Trisomy 13, meaning she had an extra 13th chromosome, and essentially confirmed what the radiologist had seen on Tuesday. Trisomy 13 babies often have the abnormal swelling, and generally have failure of all internal organs. The hygroma would not go away, and neither would the chromosomal abnormality. Babies with Trisomy 13 can sometimes live to birth, or even one year, but the majority don't make it a full 40 weeks, and if they do, they don't usually live more than a few hours. We found out then that she was a girl, just like we knew she was. Our doctor sat with us for a long time and answered all of our questions. He told us he'd had his nurse send a referral over to a Maternal Fetal Medicine Specialist, and that we would probably hear from them by the end of the day. We left the appointment shocked and sad. We were going to lose another baby.

We drove to Logan that day to spend time with Carter. We visited with Brandon's parents while we were there and delivered the bad news, then called my parents that night to tell them. We felt so bad telling everyone, because nobody really knew what to say. We didn't even know what to say. It just seemed so unfair. But spending time with Carter that day helped. I've had a lot of spiritual experiences since we lost him that I won't go into detail about, but I know our other children have been with us through all of this, and that they were preparing for their sister to return to them.

We had Friday off too, and went to see the specialist that day. They did another ultrasound and talked us through everything they were seeing. We saw the swelling then, and it made us so sad. The baby was probably about ten centimeters long, and the swelling was 1.5 centimeters on either side of her neck. It spread down a little over her chest too. The specialist said it had grown significantly since the ultrasound on Tuesday. They told us that we would probably lose her, because the hygroma would grow and her heart would get weaker, but they couldn't give us a time frame. We could have lost her that day, or I could have carried her through to delivery. They talked about us making the decision to end her life, not that we had to, but that it was an option if we didn't feel like we wanted to carry another baby full term just to lose them. I didn't even want to think about having to consider a decision like that. No parent should have to think about that.

We were supposed to go to Boise that weekend. After the appointment, we went home to grab our bags, got an hour away from home, and I decided that I just wanted to stay home. I wanted time alone with our little family, and I felt like I needed a few days to let everything sink in before I went back to work. Little Bean was super active all weekend, and Brandon and I both got to feel her move a little. We spent Mother's Day as a little family of four, soaking up all the time we had before anything happened, and not thinking about what the future could bring.

Monday morning I woke up at 4:30 to our little bean kicking, but when I got up an hour later to shower, I felt different. I didn't say anything to Brandon, because I didn't want to believe it, but all day I think I knew. I went to Costa for lunch with Alycia and had a Diet Coke to see if the baby would move, but I didn't feel anything. I called Brandon and told him I wanted to go in and listen to the baby's heart, even though we were supposed to have an appointment on Wednesday. We showed up at the office, and even though we weren't on the schedule, our doctor made room for us right away. I felt so bad for the nurse, because it wasn't the usual nurse we see, and we had to explain why we were there. I wanted to tell her not to listen, and that the doctor should be the one to do it, but I didn't want to seem high maintenance, so I let her do it, and in turn, broke her heart. She finally gave up and went to get the doctor, who fought it for a long time too. Finally he took us into the ultrasound room, looked at her fluids, and essentially everything but her heart, until it was the last thing left to look at . There was no little flutter, no heartbeat. I had asked Brandon the day before to download the recording app so we could record the sound of her heartbeat, and we didn't get to do it. That was what made me the most sad. I knew she was gone before we went to the doctor, but I'm glad I listened to my instinct and asked to go in.

Losing our little bean wasn't as much of a shock as losing Carter was. We had known it was probably going to happen for about a week, and were honestly glad that it happened on its own, rather than us having to have considered ending her life. Her pain didn't go on for longer than necessary, and we had her with us for Mother's Day. Really, the timing was okay. We hadn't planned to do the blood draw for the genetic testing until this last Wednesday, but I got antsy and did it two weeks early. Had we not done it then, we would have had to wait on an autopsy from her to find out why we had lost her. Had we miscarried in the first trimester, we would never have known why, and would have wondered if it would be safe to keep trying. We had a karyotype done in November to check mine and Brandon't chromosomes, and both are completely normal. This was, once again, a rare stroke of bad luck. 

The chances of having a stillborn are 1 in 23,000. The chances of losing a baby to Trisomy 13 are 1 in 20,000. The chances of both happening to us are 1 in 460 million. And this is why we don't gamble.

The doctor got me on his schedule for a D&C the next day. I could have been induced and tried to deliver her naturally, but more than likely I would have needed a D&C anyway, so we decided to make the process as stress and pain free as possible. We went in Tuesday, and had our little girl.

Our doctor was so sweet, and treated everything as much like a normal birth as he could. He took the giraffe receiving blanket we had for her and told us he would get it to her. He told us she was born at 2:45, and he told us she was pretty.

And just like that, we became a little family of four.

There are bright spots among all the clouds of our situation. We know we can have healthy babies, it just hasn't happened for us yet. But it will. We are as optimistic as we can be right now, even though the days are painted with occasional meltdowns and fits about how life is really unfair. I miss being pregnant, and I miss having a reason to get out of bed smiling every morning, but it will happen again.

We love our little bean, and are so happy to have had her for the time we did.

 

**We took the picture in the hospital for the sake of remembering. We wanted the "delivery" to be as typical as possible, even though it most definitely is not, and wanted to remember May 16th as the day our little girl was born.