Please pray for us today. We’re about to meet with someone and need prayers.
I plan on updating today or tomorrow. We’ve been very busy with family matters (not to mention tired) and I haven’t had a chance to update everyone on what we’ve been doing.
I will say sweet Brielle was dancing her little booty off to Magic Bus by The Who this morning.
Brielle is 35 weeks! We celebrated a little early this week. Thursday (a day early) we went and saw a Rifftrax of a horrible ’80s movie called, Miami Connection. The guys who do Rifftrax are the same guys who did Mystery Science Theater, they make fun of movies. It is really hilarious. It’s not mean, it’s all in good fun, but they are really very funny. Anyways, we had a good time out and laughed ourselves silly. At one point, David was laughing so hard I thought he was about to have a heart attack.
We also had an appointment Thursday afternoon to check my fluid levels. They were up to 47 cm, that’s a lot. I’m actually feeling better than I was at 37 cm. I can breathe and sleep fine. I’m having a lot of trouble walking and eating. There’s not a lot of room in there for food and my joints are like, “Too much weight!!” So, you know, good fun. Otherwise, everything looked great for both me and Brielle. All of our stats were perfect.
Saturday, my gastroparesis support group threw me a baby shower for Brielle. It was so kind and sweet. It was very special. We watched Jane Eyre, the 1983 Timothy Dalton version. Brielle liked it! We’ve seen two versions now and she liked both. Which is good, Jane Eyre is my favorite book. Overall, this week Brielle and I will be taking it easy and watching a lot of movies. Because that’s about all Mommy has the strength for.
Brielle did do some funny things the other day. I woke up to her dancing her little booty off. I mean flailing her arms and legs in every direction, she is quite the acrobat. I gently patted my belly and said, “Good morning sweet girl.” She froze. She stopped moving altogether and retreated deep in my tummy. I woke up again a few hours later to a new set of acrobatics, this one with lots of punches to my abdomen. So I rubbed on that spot and she once again froze and retreated. I guess I wasn’t supposed to know what she was up to. Silly girl is so shy! Saturday, David and I were watching my tummy and Brielle was kicking so hard you could see my belly jump (it’s harder to see that because of all the fluid I’m carrying). David started talking and she stopped. So I told her Daddy was gone and could she show Mommy how big and strong she is getting? Oh then she started moving again. So David had to sit there quietly and not move while she put on her little show. Later, David kept saying, “How did we get such a shy daughter?” I had to remind him, she’s OUR daughter. You don’t get much more introverted than David and I, what did he expect?
Wednesday Dennis G. had a layover in Atlanta and came out to see me and Brielle. We had lunch at The Marietta Diner (very tasty!) and caught up on things going on back home in Texas. It was so great to see him. The last few times I’ve been in Texas I either haven’t seen him or I’ve only seen him for a couple of minutes, so it was very good to see him again. For those that don’t know, Dennis and Rene have been a part of my life for the past twenty years. I grew up with them and their boys and they feel more like family than family friends. Scott and I grew up playing in the New Mexico Rockies and beating each other up back home. Him and Robert were the brothers I never had and I love their family dearly. David is also extremely fond of Robert as well, Robert is a computer nerd just like David. David always says, “Oh, I like Robert, he’s a cool dude.” I guess that’s guy talk for he likes him?
Wednesday was also Mexico Independence Day. Again, for those that don’t know, I am a born and raised Texan and I took my fair share of Texas history. It grieves me that my children will not be Texans, really, it pains me. So, I’ve decided if they can’t be born Texan they can at least be raised Texan. Since Mexico’s independence from Spain is a big part of Texas’s own history I decided that I should educate David and Brielle about this day.
We went to Pappasito’s, which is about the only place in Atlanta with homemade tortillas, so of course we went there for dinner. Brielle loved her fajitas and onions! And she really liked the mariachi band too! She had a lot of fun and wiggled around quite a bit. When we came home, I read them the story of Father Hidalgo and we discussed Mexico’s independence from Spain. David was sad that Father Hidalgo’s life didn’t end well, he was surprised by that. Such is war and revolution. Overall, I think Brielle had a great day today! Even if it ended with the story of a man dying.
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.
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!
lovingbrielle.com 