Doctor

The Ignored Defect

~ lovingbrielle ~ Leave a comment

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Imagine learning your child has been in a terrible accident. Doctors all over the world tell you your child is terminal. According to these doctors, your child’s life is no longer valuable, your child is, “incompatible with life.” These same doctors turn their backs on your child and leave you to grieve your living baby.

Now imagine learning that a few survived the same diagnosis. So you dig. You read and read. You question those that have survived. And then you figure out the common factor in survival, something no doctor has done or even tried to do.

But you have no way of knowing if your child has that common factor. You have eight weeks to not only find a surgeon to treat your child. But you also have to figure out multiple ways to save your child, in the event that your child does not have the common surviving factor.

Now, knowing all of this, imagine you only have eight weeks left with your child and at any moment your child could die unexpectedly. So you spend as much time as you can loving your child, giving your child everything you have to give, all the while using the rest of your time in study.

Can you imagine the fear? The guilt? The panic?

“What if I can’t figure this out? What if my child dies right before I solve this puzzle? Am I doing enough? Am I spending enough time with my child? What if it doesn’t work? Am I wasting precious time with my child? What if my child dies before I get the chance to say goodbye? Can I do this, can I save my child?”

Does your chest feel tight? Because mine does. And this, this is my life. A constant struggle between pure joy and love for my daughter and constant growing, gnawing fear.

Will I ever know if I gave her enough time? Will I be able to save her and make the time I sacrificed with her worth it? Self-doubt, fear, and guilt are my constant companions as we get closer to Brielle’s due date.

Tonight I asked David, “How do I live without her? If I save others with this diagnosis, but not my daughter, how do I live? She’s all I want. This is all for her.”

Family Centered Cesarean

~ lovingbrielle ~ 1 Comment


This is the type of cesarean that we will hopefully have. I’m so grateful that this is offered for us. One of my biggest concerns is that I wont be able to hold Brielle alive, with this option I can trust that I’ll be able to hold Brielle as soon as possible. Of course, there is no guarantee that she will be alive, but at least I will know that we did everything we could.

http://seebaby.org/family-centered-cesarean/

Brielle’s 29 Week Scan

~ lovingbrielle ~ Leave a comment

Yesterday we met with Dr. B. I was glad to see my iron levels came back barely normal, but normal. But also sad, because that meant I wasn’t going to like what I’d hear during our ultrasound. My heart has been racing and I’ve been short of breath. I was hoping this was due to anemia. I also found out my folate levels were very good, so Brielle does not have anencephaly because of a lack of folic acid.

Brielle was tired during the ultrasound. And she wasn’t in the mood to puton a show. The video I’m posting is of her body from about the neck or upper chest down. She’s facing towards us.

I talked to the technician some and asked her where the fluid levels were, she said above 25 cm. When I met with Dr. B to go over the scans, he told us the fluid levels were at 26 cm. This is bad news because for one, this puts Brielle at risk for preterm labor (60% chance). If Brielle is born before 37 weeks her life expectancy is not good. This is also bad, because this means her brain stem is damaged and she’s not swallowing. Which also means her life expectancy is not looking good. The cause of death for a lot of anencephaly babies is poor brain stem function. This means they are not able to breathe on their own or they lose cardio function. So this is very bad news.

This is bad news for me because, I’m very uncomfortable. To put it into perspective, it’s like being pregnant with twins at seven months. And I will continue to accumulate fluid until she is born. Right now I’m accumulating about 5 cm every 2-3 weeks. It’s hard to breathe, I have a lot of shortness of breath, and of course I’m worried. Very worried. I could have the fluid drained, but it would build right back up and put Brielle at an even higher risk for labor, I could take Ibuprofen and stop her kidney function to bring down the levels, but of course that’s not good for her either. So I told Dr. B get me to at least 37 weeks, and keep her safe, he said he’d make sure we made it there. If I start having contractions I’ll have to be hospitalized until it’s time to take her out.

If I have to be hospitalized I really would like for it to be after September 27 so that I can take Brielle to the pumpkin patch. She deserves to experience fall too. And I’d really like to make it past 37 weeks. My birthday is on the beginning of her 37th week. I don’t want my daughter to die on my birthday. Brielle and I really need your prayers.

The good news for Brielle is that she is enjoying all of the extra room she has. She’s been just as active and happy. There’s been a lot of dancing, flipping, wiggling, etc. As long as she is in my tummy she is safe. She doesn’t need her brain stem to be completely functional in utero. And so far, she hasn’t lost any of her personality or awareness. So as far as she knows, everything is just fine, and she is happy. She’s very happy.