So many think that these babies aren’t capable of anything and that everything they do is a reflex. By talking to your friends and coworkers about this defect, we can hopefully decrease its frequency and decrease the number of aborted babies with anencephaly, which is currently at 95%. I think it’s important for people to know that these babies are more than their defect and deserve a chance at life.
Fetal Development
Our Little Jimmy Buffet Fan
Well, I think we have a huge Jimmy Buffett fan on our hands. I started introducing Brielle to him today, and she has liked just about every song I’ve played for her. She is her Daddy all over again when it comes to music!
David only likes rock, christian, beachy music (Jimmy Buffett), and ’80s music. He’ll also listen to instrumental music as well, but those are his favorite genres. They are also Brielle’s favorites. I’m glad they have something to bond over and glad that David has something to remember her by. I will make an exception, Brielle has yet to embrace ’80s hair bands, which David has some strange attachment to. I’m with Brielle on that one though.
Our Hospital Tour
Brielle is 28 weeks today! We took a tour of the women’s center today. We met with Jamie today, who is wonderful and scheduled us a private tour when she heard Brielle has anencephaly. The staff there is all being told about our situation and they are all going to do everything they can to support us. I cannot begin to explain how much we appreciate this.
The building is very nice. The first floor has nice waiting rooms, a very nice bistro, restrooms, and a piano (added bonus). The second, third, and fourth floors are LDR and mother and baby rooms. David and I were very impressed with the facility and how kind and friendly everyone was.
Today was a very hard day for us. We, essentially, toured the place our daughter will die. And we had conversations about end of life care, treatment care, and harsh realities that David and I would rather ignore. Of course, we can’t ignore any of it and this is happening. I’m having tremendous anxiety. Each new week brings another helping of panic. I don’t want her to leave us and if I could have my way I’d prefer to stay pregnant forever.
I told David I don’t have a hole in my heart, a whole chunk, the whole heart is breaking off. He agreed and said that this is like watching her die in slow motion. If we could, we’d give her our heads. But that’s not how this works.
She’s not even gone yet, and this pain is more than our bodies can hold let alone comprehend.
Raspberry’s
Earlier this week, David was playing with Brielle and she was so happy. Dancing and squirming. He then said, “I’m going to blow on Mommy’s tummy!” He then blew a raspberry on my tummy. The fun and games stopped right there. He did it right on her face and she immediately stopped moving. I’m dying laughing, Brielle is trying to run away, and David is saying, “I’m such a bad Daddy!” Poor baby had no idea what that horrifying sound was and David felt horrible that he had scared her. She didn’t move for an hour. Poor baby, I kept telling her it was ok, and David kept apologizing to her. Needless to say, we won’t be doing that again.
Hearing
Brielle’s hearing has finished developing and we’ve noticed! She’s picking up sound that is much quieter now as well as having more diverse music preferences. I have no explanation for this, but when I ask her to move (so that David and I can see her move), she moves! She’ll give big kicks and punches! Last night Brielle and I were getting frustrated with her Daddy because he kept falling asleep when she’d show off! She was working so hard to show him her movements. He apologized and gave her lots of kisses though, that made her happy. She started dancing after that, I think she forgave him.
lovingbrielle.com 