Brielle’s 29 Week Scan

Yesterday we met with Dr. B. I was glad to see my iron levels came back barely normal, but normal. But also sad, because that meant I wasn’t going to like what I’d hear during our ultrasound. My heart has been racing and I’ve been short of breath. I was hoping this was due to anemia. I also found out my folate levels were very good, so Brielle does not have anencephaly because of a lack of folic acid.

Brielle was tired during the ultrasound. And she wasn’t in the mood to puton a show. The video I’m posting is of her body from about the neck or upper chest down. She’s facing towards us.

I talked to the technician some and asked her where the fluid levels were, she said above 25 cm. When I met with Dr. B to go over the scans, he told us the fluid levels were at 26 cm. This is bad news because for one, this puts Brielle at risk for preterm labor (60% chance). If Brielle is born before 37 weeks her life expectancy is not good. This is also bad, because this means her brain stem is damaged and she’s not swallowing. Which also means her life expectancy is not looking good. The cause of death for a lot of anencephaly babies is poor brain stem function. This means they are not able to breathe on their own or they lose cardio function. So this is very bad news.

This is bad news for me because, I’m very uncomfortable. To put it into perspective, it’s like being pregnant with twins at seven months. And I will continue to accumulate fluid until she is born. Right now I’m accumulating about 5 cm every 2-3 weeks. It’s hard to breathe, I have a lot of shortness of breath, and of course I’m worried. Very worried. I could have the fluid drained, but it would build right back up and put Brielle at an even higher risk for labor, I could take Ibuprofen and stop her kidney function to bring down the levels, but of course that’s not good for her either. So I told Dr. B get me to at least 37 weeks, and keep her safe, he said he’d make sure we made it there. If I start having contractions I’ll have to be hospitalized until it’s time to take her out.

If I have to be hospitalized I really would like for it to be after September 27 so that I can take Brielle to the pumpkin patch. She deserves to experience fall too. And I’d really like to make it past 37 weeks. My birthday is on the beginning of her 37th week. I don’t want my daughter to die on my birthday. Brielle and I really need your prayers.

The good news for Brielle is that she is enjoying all of the extra room she has. She’s been just as active and happy. There’s been a lot of dancing, flipping, wiggling, etc. As long as she is in my tummy she is safe. She doesn’t need her brain stem to be completely functional in utero. And so far, she hasn’t lost any of her personality or awareness. So as far as she knows, everything is just fine, and she is happy. She’s very happy.

Brielle’s First Quilt

I received a package a few days ago from my parents and inside was this beautiful quilt that Mary H. made for Brielle. I had no idea it was coming or that she had made it. It’s beautiful and I love it so much! After I received this, I told Mary that I had a special quilt made for me when I was a baby and I’d always wanted that for Brielle too. So this gift is very meaningful to me and it will be something I treasure for the rest of my life. I love the fabric and how happy the quilt is! I keep it in our bedroom with Brielle’s elephant heartbeat bear and every night I listen to Brielle’s heartbeat and hold this blanket and her elephant. I think Brielle knows that time is for her, she always does happy kicks when she hears her heartbeat.

The quilt says: Daddy Loves Brielle, Jesus Loves Brielle, Mommy Loves Brielle.

11882326_914992175228910_1155781880245361163_o
Daddy Loves Brielle
11890020_914992101895584_7928468448982829507_o
Jesus Loves Brielle
11895222_914992151895579_4465951465609930014_o
Mommy Loves Brielle
11896278_914992228562238_3406258650717859269_o
Backing
11907209_914992195228908_7135636006034257624_o
Full Shot of the Quilt

The Meaning Behind Brielle’s Name

11896416_913343748727086_5498073146148911553_o

This picture was taken on Father’s Day. The day before we chose Brielle’s name, the day before that Brielle was diagnosed with anencephaly.

When we came home that Friday the world didn’t feel real. It was dark and rainy and all David and I could do was sit in silence or hold each other and cry. We didn’t know anything, we didn’t know how to do anything, who to be, how to be. All we felt was shock, unbelievable pain, numbness, and confusion. Why did this happen to our little girl? How did this happen to her?

We didn’t have answers, but we did know two things, we were having a girl and she needed a name. We quickly agreed that her name needed to mean something, and it didn’t take much longer to agree that her name needed to have strong in it. So I pulled out the baby name book that my parents used for my sister and I, and began flipping through the pages. Nothing felt right. And so I went through my phone list that had names I had found over time. Brielle was one of the first names on the list. Before we considered it, I checked it’s meaning online. And here’s what we found:

Brielle: God Is My Strength

It was perfect, it fit her, it sounded right, and it wasn’t too much of a mouthful when you said her full name, Brielle Wolford-Gentry.

So we moved onto middle names. Well that was just awful. We always favored vowels and we could not have her initials be B.O.W.G., B.A.W.G., B.U.W.G., etc. Our daughter could not be nicknamed bog, bag, or bug. Having quite a hard time coming up with good middle names that started with a consonant, we decided to let it be for the time being. We’d come up with something eventually.

About a week later, as I was getting up for the day, the name Marie just came to me. Out of no where, it was just there. On it’s own I wasn’t sure that it would fit, but when I put it together it sounded right. Brielle Marie Wolford-Gentry. And thank God, she wasn’t a bug with those initials. Of course her middle name had to mean something as well, just any name would not do. So I looked it up on trusty old Google.

Marie (Hebrew): Wished For Child

She is wished for, constantly. I called David, told him the name, and he said yes, without hesitation. Which is a serious first for my wonderful procrastinator. And that was it. It fit her, our sweet Brielle Marie Wolford-Gentry. Our BMW-G series (my Mother’s ingenuity). And so now when I talk about my sweet little Brielle, you can know that her name isn’t one we just chose because we like it. You can know that we chose it because she needs to be strong and we want her to know she’s wanted.

Why We Chose Not to Abort Brielle

11924221_913351412059653_5474059382259145082_n

This is a post I’ve been meaning to do for a long time. I’ve never talked about why or how David and I came to the decision to keep Brielle and not abort her. And I’m not going to stand here and say that it was an immediate decision. Or that we both just knew for sure. I’m not going to tell you it was because of our faith, because it wasn’t. And I’m not going to tell you it was an easy decision.

We were told two options. The first option was presented very plainly, we could schedule a date, and we would come in to the hospital. Dr. B would inject potassium into Brielle’s heart. She would die and then labor would be induced. I could hold her, kiss her, tell her I love her. And in a short time, we could try again for another baby.

Our second option was that we could carry her to term. Dr. B let us know that this would not be easy. He warned us of the burden that it would be and how it would feel to have strangers excitedly ask us about our baby. He told us she would be offered comfort care once she was born and that she could be stillborn, live a few minutes or hours, or even live as long as a month. Dr. B left us in his office and we pulled ourselves together, nearly ran out of the hospital, and cried the whole way home.

We talked about the first two options. The first seemed practical and I had no idea how I felt about either, because I was too numb. I had just really started to feel Brielle move and I wondered, “Is it real? Is everything just a reflex? How can she be capable of anything if she doesn’t have a brain?”

David and I digested everything for a few hours after we came home. We talked about what she would look like at twenty weeks and we looked at pictures of babies at twenty weeks and anencephaly babies. We talked about how quickly we’d want to try again. We mapped out the next ten years of our lives taking option number one. And as we talked I stared at a bloody twenty week baby that had been aborted the way we were talking about. I think it was then that I knew. I knew out of this whole experience that I wanted two things. I wanted to hold my baby alive and I wanted to tell her I loved her. If she was dead, I couldn’t do either.

And then I thought about who I’d be in ten years, twenty years, thirty years. And I thought about our little girl. And I knew that I could not live with myself if I had killed my child. No matter how I looked at it, that was the decision we were making. How did I want my daughter to die? And what of our other children? Would we tell them about her? And if we did, would they wonder, if they had something wrong with them in utero or even in the future, would we still want them? Would we still love them? Of course we would, but would they believe it when we said it? The ramifications for terminating Brielle quickly began to build. We weren’t talking about just her life, but our lives, our children’s lives. And what if there was something wrong with our next child, where do we draw the line? Whose life is more valuable? How do I choose between my children? It became clear that I could live my life for myself, doing what was easiest, or I could be this baby’s mother and love her more than myself. Who did I want to be? I looked at David and I said, “I can’t kill her. I can’t do it.” David nodded, “Okay.”

We didn’t know how we were going to make it through the next twenty weeks. We still don’t know how we’re going to live through this. But within a couple of days we had decided that we would love Brielle. Just love her. We’d take her on adventures, we’d show her as much as possible, and we’d give her everything we have. We choose to live our lives without regret. And that is how we make our decisions now. “I’m too tired for the petting zoo. Will I regret not taking her to the petting zoo? Will I regret not making that memory with her? Yes, yes I will.”

And so we push through. When my ankles are swollen, and I’m having round ligament pain, and I’m utterly exhausted, I push through. When David is sweating bullets, miserable in the Georgia heat, and past the point of exhaustion, he pushes through. Who are we to complain? We have been more than blessed with a beautiful sweet little girl, who loves her Mommy and Daddy. Who can’t stop wiggling her little butt. Who is stubborn as a mule. Who has a strange love for heavy metal and Christian music. And who is loved more than anything.

Life isn’t fair, it isn’t easy, and it’s not always fun. We don’t get to choose when we die and there are no guarantees in life. All we can do is live our lives with the best possible attitude and love those around us. And that’s all that matters. Everything else washes away in time. Some people say David and I are brave for doing this. To us it just feels like living, sometimes surviving. While this will be some of the deepest pain we will ever have to endure, this has also been one of the brightest times in our lives. She’s our ray of sunshine, our little angel, and I wouldn’t trade one minute of my pain or suffering for her beautiful life. We are going to hurt for the rest of our lives, but that pain comes from missing someone that we loved deeply. If we had the choice, we’d do it all over again. Her love is all we ever wanted and all we ever needed and it’s enough, it’s enough to make all of our pain worth it.