Sweet Emmy and little Rosie creeping from behind her.
I’ve been having a lot of trouble getting up the stairs. I can only take about three at a time before I’m out of breath and my chest burns like I ran a marathon. This has made Emmy very worried. She stands at the top of the stairs and her big brown eyes look at me with worried confusion. I keep telling her, “Mommy’s okay, I just need to rest. I’m okay.” She doesn’t believe me.
So tonight, as I’m thoroughly winded, resting on the landing, she starts to smile and then runs down to the landing. She then looks at me with another big smile and runs back up the stairs, as if to say, “Look Mom, this is how you go up the stairs. I’ll show you how, you can do it!” She’s so sweet. Once I did make it up the stairs, she made sure to stay very close. She is such a good girl.
One of the things I always wanted to do with a daughter was take her to the American Girl store. My parents bought me a “Truly Me” doll when I was nine and they would take me to the store in Chicago and allow me to pick out a special outfit for my doll. I almost always chose the New Year’s outfit. The memories I have of this time with my parents are some of my favorite memories.
Naturally, I wanted to share those memories with my daughter as well. And as silly as it may sound, was one of the reasons I wanted to have a daughter. I wanted to take her to have tea with her doll, let her do crafts with her doll, buy accessories for her doll. She didn’t have to love it, I would never force it on her, but it was something I wanted to share with her.
Before we heard the diagnosis of anencephaly we were told we were having a little girl. This was a huge surprise! I fully expected boys (I have five nephews!). One of the first things I said was that I could buy her dresses, I could take her to the American Girl store! I was getting excited, David was shell shocked. He was absolutely terrified of having girls. Why? Because he was scared of something bad happening to them. You can’t do much worse than the death of your daughter, so now he only wants girls. “At least one more!” He says.
We met my friend Emily for dinner. It was cute. Star decorations on the food, the other girls eating there had special chairs for their dolls. It was adorable. And I was happy, Brielle and I were having a meal together at the American Girl store.
David and I had originally thought we’d get Brielle the Caroline doll. It will be retired after this year, so we thought that suited Brielle. Then Emily mentioned Grace, the doll of the year. Grace will only be sold for this year. Well now we were in a conundrum. Grace or Caroline, or both?! As Emily walked through the store and I waddled, we talked about which doll to get.
David decided that we should get Brielle, Grace, the doll of the year. It not only suited her, but it suited our family. Grace was on a Parisian adventure, David proposed in Paris, Grace has a charm bracelet, Brielle and I will have charm bracelets, and she has quite a bit of turquoise, one of my favorite colors. So it was settled. David lugged around boxes of doll stuff as I debated which outfit to buy Grace, and should I buy the books, the dvd? Since Brielle can’t see the doll, we decided to buy the books and dvd so that she could interact with those. She loves books and likes movies, sometimes.
And now it’s decided, each daughter should have a doll of the year, for the year she is born. And Emily has bought her daughter, Riley, the doll of the year from 2014. I like that tradition. I had fun sharing this with Brielle and having Emily there with us. Brielle slept most of the time, but did do some happy kicks for us.
Once we were home I unboxed the doll. Rosie and Emmy went crazy sniffing the doll and as they sniffed Grace, I told Brielle about the doll. I felt quite a few big happy kicks. I don’t know what she understood, but I’m glad she was having fun hearing me tell her about the doll. And so far, she has enjoyed the Grace book.
A couple of days later, David bashfully said, “I had fun shopping with you and Brielle. I liked buying her things.” He loves his little girl so much, he is such a great daddy.
Brielle and Mommy posing in front of the store.Mommy, Brielle, and Daddy with Grace!Mommy and Brielle with Aunt Emily!
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.”
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.
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.
Daddy Loves BrielleJesus Loves BrielleMommy Loves BrielleBackingFull Shot of the Quilt
lovingbrielle.com 