Saturday we met my parents in Savannah at a funky place called Treylor Park for lunch. Mommy and Brielle had a bite of Papa and Grandma’s grilled apple pie with chicken, it was tasty! We had PB&J wings, fried Oreos, a bite of Daddy’s sausage gravy chicken biscuit (very yummy!) and a burger with special kettle chips that Brielle loved.
Brielle is so happy today! Maybe because she knows today is her 26th week! We have a big surprise for her this weekend. A trip to Savannah, GA and Tybee Island. AND we’re meeting Papa and Grandma! So much excitement and adventure for a little girl.
On a side note, she’s been dancing like crazy for Christian music today. Favorite so far is Do Life Big by Jamie Grace. However, a few days ago it was Iron Man by Black Sabbath. Silly girl has very eclectic tastes!
What a day! We’re celebrating Brielle’s 25th week this week. I saw that there was an ice cream festival at Piedmont Park and so we decided that was the best thing to do this weekend!
We’re so silly. The “festival” didn’t offer much and the lines were so long we couldn’t even get close to the food trucks and have ice cream. So we walked, and walked, and walked. Between round ligament pain, the heat, a bum foot, and swollen feet. The park experience had me telling David how much I hated him, surprisingly a first in our relationship. Poor David and poor Brielle. She hated the experience. She was giving me her, “I hate this!” kicks, and jamming her little feet right into my side that was in pain. Oh it was fun.
The real fun part was when we went shopping at Phipps Plaza, before Piedmont Park. This mall of course had me saying, “Why can’t all malls be like this?” Phipps has all of my favorite stores in one building! Other malls just don’t. So David and I took Brielle on a bit of a shopping experience. I think she slept through the whole thing. But Mommy had fun! I tried on shoes at L.K. Bennett, which were amazing, really, everyone go buy a pair. But leave the size 42s for me please (European sizing for those who don’t know). Then we went to Tiffany’s, because they have beautiful charm bracelets and Brielle and I decided that we need one. There is a ballet slipper charm that I’d like to get for Brielle since her first book that she liked was called “The Silver Slippers.” So I picked out exactly what I want and had it written down for David. I like to just tell him exactly what I want for presents, instead of letting him guess and come up with things that I don’t like. Then we went to Saks and walked around, looked at YSL bags, and more shoes. Mommy was in heaven. And then Piedmont Park happened.
I will say the park was beautiful and we can’t wait to go back when I’m not pregnant.
We had dinner at Stony River, a tasty steak house in the Atlanta area. I gave Brielle shrimp for the first time, she was unimpressed to say the least. And we had stone pups, a tasty donut like bread they serve, that was a huge hit! Maybe the first bread ever that she has liked. We then had filet mignon, of course, and au gratin potatoes. She was a huge fan of the au gratin and enjoyed the steak. We then went to Bruster’s on the way home and Brielle and I had chocolate chip cookie dough ice cream. She liked it better than the shrimp, but it wasn’t her favorite.
We also discovered today that Brielle likes Van Halen and AC/DC a lot. Really starts dancing for AC/DC. She also likes Queen, while listening to We Will Rock you for the second time, Brielle kicked in time with the stomping clap part. She’s so funny, she loves her music!
After talking to Dr. B, David and I have come up with our game plan. I won’t go into the comfort care procedures we will or will not do, but I will go into how we intend to treat her. A lot depends on how she fares outside of my body.
Here are our odds with a vaginal birth:
7% died in utero
18% died during birth
26% lived between 1 and 60 minutes
27% lived between 1 and 24 hours
17% lived between 1 and 5 days
5% lived 6 or more days
Our odds with a cesarean:
4% died during birth
53% died within 24 hours
30% lived up to 5 days
13% lived longer than 6 days
We know that 9% of these babies die from other defects or a complication from them, another percentage dies from, essentially, heart failure or respiratory problems, and then others from infection. I’ve found no other causes of death so far.
Here’s what we know about Brielle:
She’s strong and all of her organs are healthy and growing as they should. She does not have any other defects. And most importantly her heart is strong. She also has brain matter and theoretically is rewiring her brain to keep herself functional (this is called neuroplasticity).
Here are the ifs:
If Brielle survives delivery and if her lungs form and function correctly, and if we can minimize brain tissue loss from amniotic fluid (hopefully by keeping the fluid clean), and if she stabilizes after she’s born, (meaning her oxygen and blood pressure stay steady) then we can put a plan into action.
So here’s my plan. David and I learn as much as we can about procedures that have been done for anencephaly patients (including the doctors and hospitals involved) and present it to a pediatric neonatologist. We find someone who will help us. We give an allotted amount of time, determined by a doctor, to make sure she is strong and her vitals are steady. We begin antibiotics to prevent infection from her exposed brain and then we implement a procedure to cover the exposed brain and essentially build her a skull. And then, hope for the best.
Here’s the problem, there has only been a handful of these procedures done in the world. Very, very few doctors are willing to change their mindset of anencephaly, let alone, treat it. And we have no idea what to expect if we can treat her.
If you want to help us with our “Save Brielle Mission” you can pray. I don’t care what your faith is, we’ll take all the prayers we can get. And if you really want to get into the nitty gritty, you can help us research people who have helped these babies. We need to have a presentation ready in 11 weeks. As always, you can love our baby girl and cheer for her to make it, just as you all have already been doing. And you can also tell others how special these babies are and how worthy they are of love and life.
We had a wonderful appointment with Dr. Bootstaylor today at Emory University! David and I were a nervous wreck all day, we had no idea how receptive Dr. B would be to how we felt about our baby and what we know she is capable of.
Even though he was incredibly busy today, he made time for us, greeted us (and remembered us) in the waiting room, and brought us to his office. He never once made us feel rushed or as if our questions weren’t important.
We talked about cesarean vs. vaginal delivery, what delivery would be like, hospice, how he felt about her and us, treatment options, etc.
He was very happy we had chosen to keep her and I think excited as well. He told us that he saw this as a real pregnancy and a real baby that deserved just as much care and attention as any other pregnancy. He was not disgusted or annoyed with us keeping a baby that is “incompatible with life” and quite frankly, disagreed with the belief that these babies aren’t important or valuable. He was thrilled with all of the things she can do, and seemed genuinely happy to hear how well she is doing and what a sweet baby she is. We asked him how many babies with anencephaly he had seen go full term (because he has said before that he has seen quite a few babies with anencephaly), he said in 25 years he has seen 10. To be honest, that was more than I was expecting.
We discussed delivery options and he understood our main goal was to see Brielle alive and hold her alive. We talked about how a cesarean would be with him and which incision would be the least traumatizing to my body. The risks are still there, but we agreed a low transverse incision would be best, so I can birth vaginally with my other pregnancies (.2% – 1.5% of uterine rupture). His goals for delivery were exactly what ours were as well. Immediate skin to skin contact, delayed cord clamping (30% of the baby’s blood is the the placenta after delivery so it is best to avoid cutting the cord until the cord stops pulsating), and no restraints during the operation so that I can bond with Brielle. And he made it very clear that she would never have to leave me during the c-section. Vaginal delivery is pretty much however I want to do things, I even get to eat! He told us that it is really too early to decide between the two, and that I may go into spontaneous delivery and take the decision out of our hands, or that I may go full term and then we can schedule a delivery. I appreciated that he wanted to do what was best for us and not what was best for his time or bank account.
He told us that he was open to helping us find treatment and told us that with Brielle we would be the educators to the doctors we come in contact with and he told us we need fortitude, because there is going to be resistance. But he was happy to help and excited to change the way anencephaly is seen. He told us that was our place in life, to bring attention and change to this defect. We agreed around 36 weeks we will see a pediatric neonatologist and discuss treatment options and a plan once she’s born. Which is something David and I will need to be fully educated for. I’ll make an exciting post about this later.
We are so impressed by Dr. Bootstaylor and we adore him. He truly is a Godsend and has been kind and supportive of us through this entire journey. I could not ask for a better or more qualified doctor to help us through this time. Any ATL friends, you need to go to his practice, because he is amazing.
lovingbrielle.com 