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Mexico Independence Day

~ lovingbrielle ~ 1 Comment

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.

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Do Something

~ lovingbrielle ~ Leave a comment

“I woke up this morning
Saw a world full of trouble now
Thought, how’d we ever get so far down
How’s it ever gonna turn around
So I turned my eyes to Heaven
I thought, ‘God, why don’t You do something?’
Well, I just couldn’t bear the thought of
People living in poverty
Children sold into slavery
The thought disgusted me
So, I shook my fist at Heaven
Said, ‘God, why don’t You do something?’
He said, ‘I did, I created you’

If not us, then who
If not me and you
Right now, it’s time for us to do something
If not now, then when
Will we see an end
To all this pain
It’s not enough to do nothing
It’s time for us to do something”

The Hard Truth About Anencephaly

~ lovingbrielle ~ Leave a comment

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I won’t go into details, but today was a bit of a defeat for another anencephaly mom. It breaks my heart and it makes me boiling mad when doctors refuse to care for these babies. It burrows into my heart when they say these babies only have reflexes and aren’t really living. I think what upsets me most, is that they completely turn their backs on the families in these cases and refuse to learn. They blatantly refuse to hear about these babies. And they close their minds to knowledge.

I mentally recoil and wonder, but aren’t you supposed to serve the sick? Aren’t you supposed to advance scientific knowledge? Aren’t you supposed to…?

The questions build in my mind and then I’m reminded that we live in a cruel world. And no matter how advanced we like to think we are, or how progressive we may think we are, we really are no better than barbarians at times.

We deny aid to the wounded, the sick, to those who are helpless. We deny life when it makes us uncomfortable. We deny love and compassion to those that are less fortunate. We live, constantly denying the tragedy around us. We tell ourselves we’re enlightened and that we are better than our predecessors. I look into the eyes of some of these doctors and see nothing but emptiness, cruelty, barbarity. I see a monster. Someone who is glorified as having all the answers and being a miracle worker. But behind the facade I’m met with a very ugly truth.

This isn’t a truth we’d like to think about our medical professionals. We’d like to think they are honorable. And there are honorable medical professionals. Medical professionals who do not fit the description I have previously written about. Ones who fight hard for what is right. And to those doctors I give my deepest thanks and admiration. However, there are many who don’t deserve their title. And there are far too many of these doctors “treating” anencephalic babies and their families.

Sometimes I wonder why bother with trying to advance research and change with anencephaly. And then something like today happens and I’m reminded that, yes, the majority of these babies die. A small, small percentage survives. And there are vast differences in the quality of life of those survivors. But they lived.

The babies who only lived inside their mommy’s tummy, lived. They mattered. Their stories deserve to be told. They deserve to be treated with respect and dignity. The mothers, fathers, grandparents, aunts, uncles, friends of these babies deserve to be treated kindly and with compassion. And those are things that are worth fighting for. Fighting for what is right, is worth it. These babies, alive or dead, are worth adversity and setbacks. They are worth our love. Their families are worth our compassion.

We can live in denial and pretend that we have become a more advanced people. Or we can acknowledge our shortcomings and change. We can change how we treat each other. The world doesn’t need more tragedy, it needs more love and compassion. And I’m not going to stop fighting until I’ve seen the world change.

Brielle Has a Membrane!

~ lovingbrielle ~ 1 Comment
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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.