Brielle’s 27 Week Check Up

We went to the doctor Friday. We received some bad, but not terrible news. My amniotic fluid is a little high, it’s still within a healthy range, but it’s creeping up there. High levels are 25 cm, normal is 10 cm, mine are at 20.85. That’s 4 inches larger than normal and 1-2 pounds heavier than normal (I think I have that right). Brielle is swallowing, but just not enough. We really need prayers about this. If I go above 25 cm I may go into preterm labor, be put on medication to stop contractions, and go on bed rest. If I get into 40-50 cm range Dr. B will have to drain off the excess fluid because I’ll have trouble breathing. Think an extra 8-10 pounds with a 4ish pound baby at 33 weeks. This isn’t a good solution, because the fluid will build right back up within a week and it puts Brielle at risk for preterm labor. So prayers please!

It was our first visit officially with SeeBaby Midwifery, the practice that Dr. Bootstaylor runs. It’s incredibly common in almost every country besides the US, to have midwives attend the birth at the hospital and only call in an OB GYN when forceps, vacuum, or cesarean are required. His practice follows that model, instead of the typical American model. So we will see a midwife for our general appointments and Dr. Bootstaylor after ultrasounds and for specialty check ups.

The technician took her time with the ultrasound and did her best to get the best pictures she could. However, Brielle is a wiggle worm! And would not stay still for clear pictures. So we were unable to get a view of her head since she had it hidden on my cervix. We were able to get pictures of the rest of her though. She’s growing just like she should. Her heart and lungs are healthy, her weight is on target, and she’s a wiggle worm! She weighs about two pounds right now and is the cutest thing!

Mom and Dad bought us an elephant heartbeat bear to record Brielle’s heartbeat in. They bought an elephant since she was going to the zoo to meet an elephant. So Brielle’s stuffed animal will be an elephant. The technician got a recording of her heartbeat, but of course Brielle would not stay still and moved in the middle of the recording. David and I liked that she did that, it captures who she is, and we’ll have that memory forever.

This video from the ultrasound captures Brielle moving around. She’s like this just about everyday. She’s a happy baby and loves to move her legs and arch her back. She also likes to keep her hands around her face. One hand fisted next to her mouth and the other near her brow, rubbing her face. She gets this from me. I sucked my thumb for forever, and even still sleep with my hands around my face. I also can’t sit still, ever. The way she’s moving in this video reminds me of my Uncle Scott Wolford when he was a young boy. He was kind of wild. Brielle is very much a Wolford.

Resources for Friends & Family

24508161122_0006c1897b_o

I wanted to share this link with family and friends. It’s a resource for family and friends affected by anencephaly. I know that a lot of times no one knows what to say or do and David and I don’t have the strength to help others while we go through this ourselves. So maybe this will be of some help to our family and friends as we all go through this.

http://www.anencephalie-info.org/e/family.php

Losing a Child

GrievingWomanWithTissueInHand-850x400
Picture and article can be found here. 

I don’t think anything makes me happier than bragging on and talking about Brielle. I love her so much. My friend Emily, shared this link with me today and I think it rings true for me. I haven’t lost Brielle yet, but I do think of the days that will come when my little girl will be forgotten by others. That pain is deep and it terrorizes me. All I want for my baby is to be remembered, loved, I want her story to be shared. I don’t want her to be forgotten. I may break down and cry when I speak about her, or laugh as I remember how she would do things, I wont always know how I’ll react when people ask about her, but I want to be asked. I don’t want anyone to walk away and mumble an, “I’m sorry.” I’m sorry she’s gone, but I’m not sorry that I am her Mommy. I’ll never be sorry for the time I’ve had with her. I don’t want anyone else to be sorry either.

Spina Bifida & Anencephaly

LucaHill
You can visit them here.

Sharing this from Luca Hill’s FB page, another sweet boy lost to anencephaly. Spina bifida and anencephaly are both neural tube defects.

DID YOU KNOW?

Before 1960 the survival rate for all forms of Spina Bifida was 10-12%. Doctors were certain of mental retardation and that all babies with Spina Bifida had an unacceptable quality of life. (NCBI.NIM.NIH.GOV) Doctors refused to treat a baby that was diagnosed with Spina Bifida.

Sound familiar?

Because of a strong push in medical equality, surgery within the first 48 hours of delivery, and developments in medical technology (shunt, fetal surgery) 91% of babies born with Spina Bifida live WELL past their first year of LIFE and live a life full of joy, happiness, and purpose. (http://www.spinabifidamoms.com/english/myths.html)

So…Why not ours?

Check out this little ball of sunshine, Evie Grace, LIVING with Spina Bifida and bringing so much sassiness and silliness to those who adore her.https://www.facebook.com/EviesWarriors?fref=ts

Anencephalic Odds

23989550723_a208b65f14_o

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.