Brielle’s Life

Brielle Has a Membrane!

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Our baby girl is smiling!

Good news! Brielle has a membrane covering her brain!! This is huge and helps give her a better outcome. I’m going to consider this an answered prayer, so please keep praying. Our little girl needs those prayers and they’re helping.

Brielle was a little stinker all morning. She did not want to be monitored or seen. During the ultrasound she kept trying to hide and she spent a lot of time burrowing into my diaphragm. That is one of her favorite places to go. While I’m glad she’s found a comfy place to snuggle, I’d really like to breathe. Speaking of which, my fluid was up to 37 cm. That’s a lot. Combine that with her burrowing and I was blacking out during the scans. Too much weight on my poor lungs and diaphragm. We watched her playing with her umbilical cord. During one point she threw her arm over her face, in what I can only guess, at an attempt to hide. She also pulled her knees up to her chest and then stretched them out and crossed them like a lady. She likes keeping her hands near her face, as you can see in her 3D pictures. She’s just so cute, I can’t get enough of her.

We tried to do a stress test today and that was nearly impossible. I have so much amniotic fluid that Brielle can flip from a breech position to a head down position without me even feeling her and she can do it quickly. She’s a good swimmer! She did a couple somersaults in her attempts to thwart the monitor and punched and kicked the thing as much as possible. She really does not like that thing. We managed to capture her heart rate for maybe a whole five minutes after thirty minutes of trying. And what we captured wasn’t all that reliable either. So we’ve decided the stress tests at this point are useless and we won’t be continuing them, but will monitor her heart rate via ultrasound. We’ll also monitor my placenta via ultrasound as well, to make sure that it is staying healthy.

We talked to Dr. B today about how to deliver her in a way that would minimize head trauma. We’re hoping that I will go in without my water breaking so that he can turn her to a breech position and pull her out that way. He thinks that will be less traumatic.

David and I have to make some tough decisions now. I want to hold her and keep her with me, but if she is going to be treated at all, she needs to be taken to the NICU. It breaks my heart to have her taken from me, but if we can do anything to save her I want to do it. The problem is that we won’t know what needs to be done until she’s born. And David and I need to have plans for multiple scenarios. There’s also only so much they can do. If she develops a brain bleed there really isn’t much that can be done. The biggest treatment option we have is covering her head. And that’s something we need to talk to the neonatologist about.

What we’re asking and pushing for is not done. These babies are not treated, they are not carried to term, they are not offered anything but comfort care, sometimes not even that. We’re asking for a lot and we’re asking for very busy doctors to try and develop a new way of thinking and treating anencephaly.

To David and I, if we can just have a Christmas with her that would be enough. It would be the greatest gift we can imagine. It’s a lot to hope for, but it would mean so much. We’ll never have enough time with her, but if we could just have some time, just a little, it would mean the world.

 

 

It Will Be Okay

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One of Brielle’s favorite books is “It Will be Okay” by Lysa TerKeurst. I bought this for Brielle not long after we were given her diagnosis. At the time I was still learning to talk to Brielle and be comfortable having conversations with my belly. It had not occurred to me yet that maybe David and I needed to prepare Brielle for what was coming. Her reaction to this book when we first read it to her was immediate. She was happy and it surprisingly brought comfort to David and I as we read it to her. At times, this was the only book she would respond to and so we would read it, over and over again.

Within a few weeks, I began telling Brielle what was going to happen when she was born and I continue to do this. I tell her how it will be scary. That it will be cold and she might be in pain. I tell her that she is very sick and that she will need to fight hard to stay with Mommy and Daddy, but that if it’s too hard that it is okay for her to go. But I always ask her to hold on just long enough to let me hold her. I want her to be with David or I as she passes. I’ll tell her about the doctors and nurses and how she may not be able to be with Mommy right away, but Daddy will be there, he will be close to her. I tell her to be brave and not to be afraid, that it will all be okay. And no matter what, Mommy and Daddy love her.

I feel like this sweet children’s book helps not only her, but also David and I. The book follows a little seed, who lives in a cozy packet in a cozy shed, and who makes a sweet friend called Little Fox. But then the Farmer (God) takes him out of his cozy packet and puts him deep in the ground. Little Fox and Little Seed are scared and afraid of what will happen. There are two parts that I always love and that even now Brielle just perked up for as I read aloud again.

“Little Fox thought hard for something to say or something to do that would help his friend not be scared. But he was afraid too. ‘It’s different and scary to be someplace new…but it will be okay, Little Seed.’ Little Seed was not so sure. And neither was Little Fox. But the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even when they didn’t know it.”

I often let Brielle know that I’m scared too. And that I don’t want to lose her and I’d do anything to keep her with me. I’ll hold my belly tight and tell her, “But it will be okay, you will be okay, Mommy is just going to miss you.” And I think that’s why I like the ending of this book so much. Brielle and I may be apart for a long time, but one day we’ll be back together again and we’ll have made it through the dark and scary time.

“Together they made it through the dark and scary time, and together they each learned that the Farmer was good, and the Farmer was kind, and the Farmer was always watching over them. Even in dark, messy places.”

Brielle’s Spirituality

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I watched this earlier and as I was watching it I felt Brielle start to move. The longer I watched the more she moved. And once the clip ended? She stopped moving. Brielle does things like this all the time, things that make me wonder just how much she understands. For instance, every time we pray she starts moving. When we’re at church she dances during the music. No matter what kind of music it is. We can be in a church that is all acapella and incredibly quiet. We can be in a church filled with thousands which a choir and orchestra, people singing out loudly and boldly for the Lord, and she dances.

During a sermon a few weeks ago, the preacher stated, “Jesus is the way, the truth, and the life. No one comes to the Father except through him.” She jumped. She jumped so suddenly she knocked the breath right out of me. I don’t have an explanation for these things. And quite frankly, I don’t need one and I don’t think there ever will be one. But these things make me wonder. I wonder if she has her own faith, her own opinions and feelings about God. And it makes me ponder on this quote: “We are not human beings having a spiritual experience. We are spiritual beings having a human experience.” While I’ve always thought this to be true, I never once thought of it through the eyes of a baby. Through the eyes of my daughter. And I really don’t think there is anything quite as beautiful as pure innocence celebrating God.

Brielle is 31 Weeks!

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Friday was the beginning of Brielle’s 31st week! We took her out for hibachi and she liked it! She liked the soup they served and she jumped during the big fire part of the show. We’ve been watching the Harry Potter series, so we continued with another movie after dinner. She’s not really into Harry Potter, she liked the first one, but the rest she doesn’t really enjoy. I think its because the first one had a lot of music.

Saturday our friends John and Courtney came down to visit for the weekend. We went to Bahama Breeze for dinner and I gave Brielle a pineapple drink. She really liked that! There was a lot of jumping and dancing. She did not like conch fritters or jerk chicken. Dad said she was like Papa, he didn’t like conch fritters either. We watched a crazy movie that night and we were all laughing hysterically. Brielle loved that, she loved hearing us laugh, and was so happy the whole night. She kept dancing and doing her happy wiggles. I actually had a hard time settling her down so that I could sleep. Silly girl!

Sunday morning she was a sleepy head, until she smelled bacon! Then she perked right up and kept kicking me like, “Why aren’t we eating yet?” She loved her breakfast. Strawberries, orange juice (she’s been craving that), bacon, and biscuits with winter white honey from Savannah Bee company. Oh she was so happy. Brielle had a good day. She took a nap for the rest of the day. Only waking up to enjoy food again. She is her father’s daughter.

I was exhausted Monday, so while I had planned on having a picnic, flying a kite, and playing mini golf with Brielle. It didn’t all happen. We went to a used book store and were very happy to see they had a huge children’s section. So we bought Brielle nine new books. After that, we went out to play mini golf that evening after dinner. Brielle curled up on my right side and slept the entire time. We had a great time, but it was exhausting. There were a lot of stairs and I seriously underestimated what I was able to still do. David helped me walk around though and get up and down the stairs. He also placed my ball every time for me and let me use his when I hit my ball into the water. He’s such a great husband.

We decided to test her vision Monday night, by shining a light on my tummy. She really did not like that and ran away from the light. She’d been sleeping so she was not a happy camper. We wont be doing that test again. But she can see! This is huge! It means she’s exhibiting all five senses, which is one of the things that doctors say anencephalic babies can’t do.

That night David read her Fox in Socks by Dr. Seuss. That didn’t go over well. She actually tried to hide from the book. First she kicked me really hard, and then she burrowed as deep into me as she could. And just kept on trying until I stopped David from reading. David was relieved as well, he didn’t like that book either! So he read her Beauty and the Beast. She really liked that book! She came back out of her hiding place and snuggled back up on my right side. She did a few happy kicks and she just felt happy.

Brielle was very happy and very active all weekend. I’m glad she had fun. She’s been very sleepy since Monday. I think we wore her out. It certainly wore Mommy out!