Anencephaly

Death is Nothing at All

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Each day I am a bit more anxious than the day before. And tonight, after I’ve tucked Brielle in for the night, with a bedtime story and a lullaby. I find myself wondering how many more nights I’ll be able to read to her and hold her tight. Then I stumble upon this poem, which I’ve always found both heartbreaking and comforting.

“Death is nothing at all.
I have only slipped away to the next room.
I am I and you are you.
Whatever we were to each other,
That, we still are.

Call me by my old familiar name.
Speak to me in the easy way
which you always used.
Put no difference into your tone.
Wear no forced air of solemnity or sorrow.

Laugh as we always laughed
at the little jokes we enjoyed together.
Play, smile, think of me. Pray for me.
Let my name be ever the household word
that it always was.
Let it be spoken without effect.
Without the trace of a shadow on it.

Life means all that it ever meant.
It is the same that it ever was.
There is absolute unbroken continuity.
Why should I be out of mind
because I am out of sight?

I am but waiting for you.
For an interval.
Somewhere. Very near.
Just around the corner.

All is well.

Nothing is past; nothing is lost. One brief moment and all will be as it was before only better, infinitely happier and forever we will all be one together with Christ.”

by Henry Scott Holland

Brielle’s 29 Week Scan

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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

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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.

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Daddy Loves Brielle
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Jesus Loves Brielle
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Mommy Loves Brielle
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Backing
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Full Shot of the Quilt

The Meaning Behind Brielle’s Name

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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.