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.

 

 

Missed Opportunity

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We were unable to meet with Dr. B today. He had an emergency cesarean. We did enjoy seeing our little girl! My fluid is up to almost 32 cm. I’m concerned that Brielle’s brain stem is not functioning well, that amniotic fluid is deteriorating her brain, or that she might have a brain bleed. We really won’t know until I have an MRI, hopefully something we can discuss next Tuesday.

More Prayer Requests

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Okay, more prayer requests. I have another doctors appointment this afternoon. The last one went well and he was receptive to the information I gave him. This time, I have even more. I’ll be sharing my preliminary thoughts on procedures that should be put in place. And also sharing with him all of the potential causes of death for anencephaly. I’ll be talking to him about ways to avoid these problems and how to save Brielle. Again, this isn’t done. Actively trying to save a child with anencephaly is not done or encouraged. So prayers for this would be greatly appreciated. Also, please pray that God can open my eyes to more information and give me more understanding so that I can figure out how to save these babies.

Prayer Requests

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I have a very specific prayer request. We are going to push for MRI’s and imaging to check on the health of Brielle’s brain. Please pray that not only will we be connected to the right doctors for this, but also that insurance will approve it. It is not normal to have these babies treated, so our insurance may tell us no. Please pray that they say yes. We so badly want to give Brielle her best chance.

Brielle’s 30th Week!

Last Friday, August 28, marked the beginning of Brielle’s 30th week! I felt really bad that I hadn’t planned anything special for her this weekend, I mean it’s her 30th birthday! So David brought home cupcakes from Gigi’s (wedding cake, red velvet, strawberry shortcake, and bubblegum), and we threw her a small birthday party. We sang her happy birthday and blew party horns, because we didn’t have any candles. Mommy fail this weekend.

She really liked the bubblegum cupcake, but it was seriously awful. I tried so hard to eat it for her, but really I just couldn’t. So we had strawberry shortcake instead, she dealt with it. We went to Chattanooga this weekend and hung out with some of David’s friends and met his mom, Brielle’s BeBe, for dinner.

Sunday morning I woke up with terrible lower back and lower abdominal pain. I drank some water and laid down for a few more hours, hoping the pain would subside. It didn’t. So I called my midwife and she wanted to see me at the hospital. So Brielle, David, and I spent Sunday at the hospital. This is a big concern, because Brielle has polyhydramnios she is at risk of going into preterm labor (because my body thinks I’m around nine months along).

We were supposed to meet up with my doula Sunday at Starbucks, instead we met up at the hospital. It was wonderful to get to meet Lauren. She is so kind and I adore her. She is another anencephaly mom, so she is incredibly supportive and understanding during this time.

I had monitors all over me to capture Brielle’s heart rate and make sure I wasn’t having contractions. I had to stay very still, and in strange positions to get her heart rate at all. Little Brielle was determined not to be monitored and kept trying to kick it off or run away from it. At one point she kicked it so hard the nurse jumped back and said, “Whoa!”

David and I had fun listening to Brielle’s heart beat. I wanted to see her reaction when we played her music. So I played her Crystal Baller by Third Eye Blind. She liked that! She started dancing and her heart rate started climbing. I then played her another song, she slowed down and her heart rate started dropping, she wasn’t interested in that one. So then I played her Back in Black by AC/DC, she really liked that too, she started dancing and her heart rate went right back up.

I wanted to see how she responded to my voice, so I started talking and singing to her. It was cute. She moved differently, she wasn’t wild (like when she hears music), it felt like she was listening and squirming in happiness. It was much more gentle, her heart rate also began climbing like it did for the music we played her. David started speaking to her too and she moved differently for him too. She gets excited when she hears her daddy. She’s such a happy baby.

I eventually was discharged, I wasn’t having contractions and there wasn’t an infection. So we had dinner at Maggiano’s. I ordered her a strawberry melon soda, oh she loved that! And really what’s not to like? She’s so funny, she loves her fruity flavors.

I’m bummed that this was her 30th birthday celebration. So David and I have a lot of things planned for her 31st, this coming weekend. She only deserves the best of everything.

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Brielle is 30 weeks!
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Her yummy cupcakes, except for that awful bubblegum one that she loved.