Please keep me in your prayers. It’s getting very hard to breathe. Draining the excess fluid can cause preterm labor and she could be poked by the needle, especially since she’s a wiggle worm. So please pray that we’ll know what to do when the time comes (which could be very soon) and that she’ll be okay if we have to drain.
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.
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.
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.
We went to the doctor Friday. We received some bad, but not terrible news. My amniotic fluid is a little high, it’s still within a healthy range, but it’s creeping up there. High levels are 25 cm, normal is 10 cm, mine are at 20.85. That’s 4 inches larger than normal and 1-2 pounds heavier than normal (I think I have that right). Brielle is swallowing, but just not enough. We really need prayers about this. If I go above 25 cm I may go into preterm labor, be put on medication to stop contractions, and go on bed rest. If I get into 40-50 cm range Dr. B will have to drain off the excess fluid because I’ll have trouble breathing. Think an extra 8-10 pounds with a 4ish pound baby at 33 weeks. This isn’t a good solution, because the fluid will build right back up within a week and it puts Brielle at risk for preterm labor. So prayers please!
It was our first visit officially with SeeBaby Midwifery, the practice that Dr. Bootstaylor runs. It’s incredibly common in almost every country besides the US, to have midwives attend the birth at the hospital and only call in an OB GYN when forceps, vacuum, or cesarean are required. His practice follows that model, instead of the typical American model. So we will see a midwife for our general appointments and Dr. Bootstaylor after ultrasounds and for specialty check ups.
The technician took her time with the ultrasound and did her best to get the best pictures she could. However, Brielle is a wiggle worm! And would not stay still for clear pictures. So we were unable to get a view of her head since she had it hidden on my cervix. We were able to get pictures of the rest of her though. She’s growing just like she should. Her heart and lungs are healthy, her weight is on target, and she’s a wiggle worm! She weighs about two pounds right now and is the cutest thing!
Mom and Dad bought us an elephant heartbeat bear to record Brielle’s heartbeat in. They bought an elephant since she was going to the zoo to meet an elephant. So Brielle’s stuffed animal will be an elephant. The technician got a recording of her heartbeat, but of course Brielle would not stay still and moved in the middle of the recording. David and I liked that she did that, it captures who she is, and we’ll have that memory forever.
This video from the ultrasound captures Brielle moving around. She’s like this just about everyday. She’s a happy baby and loves to move her legs and arch her back. She also likes to keep her hands around her face. One hand fisted next to her mouth and the other near her brow, rubbing her face. She gets this from me. I sucked my thumb for forever, and even still sleep with my hands around my face. I also can’t sit still, ever. The way she’s moving in this video reminds me of my Uncle Scott Wolford when he was a young boy. He was kind of wild. Brielle is very much a Wolford.
lovingbrielle.com 