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Tuesday, April 7, 2015

when everything changes...

A month ago, if you had told me that life was hectic, I would have quickly nodded. I would talk about the backyard birthday parties and family weddings and spring fun. I would have been frustrated by flowerbeds that need weeding and spaces that need cleaning. But we're never ready for how things can change so quickly.

Just a few weeks ago, we heard the news: Our sweet girl Eliza has been diagnosed with spina bifida and hydrocephalus. 

The term spina bifida literally means “split spine.” It happens when a baby is developing in the womb and the spinal column does not close entirely. There are varying degrees of it, but the most common is also the most severe, causing paralysis and nerve damage to the parts of the body below the opening in the spine. Hydrocephalus is a secondary disorder that is common caused by spina bifida. The pressure from the spinal issues can create a pulling force on the brain. Portions of the brain actually shift downward and keep the cerebral spinal fluid in the brain from being able to flow properly. Obviously anytime you're dealing with issues in the brain, the consequences can be dire.
I was fortunate enough to find out about Eliza's conditions early by way of a genetic screening that my OB offers to all of her patients. When the results came back extremely elevated, we were quickly set up with a maternal fetal specialist that confirmed our fears. From there, everything has seemed to happen very quickly... and very slowly at the same time. 

There is a innovative fetal surgery that is offered to some spina bifida patients that has seen great results. Yes, I said fetal surgery. As in, Eliza would be operated on while I'm still carrying her. It carries great risk to both of us. And right now, we don't even know if we qualify. Spina bifida is known as a "snowflake condition" because every single case is so different from another. Surgeons must analyze and over-analyze each specific case. Only a few fetal surgery clinics in the country even offer this program, and as you would expect, they are very particular about who they will have on their operating tables. The tiniest details can allow you to be a candidate or be disqualified.

The secondary option for spina bifida babies is to carry them normally, and as soon as they're born, have the surgery needed to close their backs and if needed, additional brain surgery to treat their hydrocephalus.

Eliza and I have been invited to come to the Spina Bifida Clinic at Vanderbilt Hospital next week for a full evaluation. Basically we will undergo a full day of testing and at the end of it, find out what route would be best for our little girl. Fetal surgery or newborn surgery.

{a link to Vanderbilt's fetal spina bifida surgery page}

{my mind was blown by the fetal MRI, and especially this giant film that we were given to keep}

It's a lot. And its such a shock. We're learning so much about spina bifida, potential surgeries and what we can try to expect in the coming months. That's probably been the hardest thing, not know what to expect. Our evaluation next week will give us loads of information about this sweet girl and we are not so patiently waiting for that day.

Until then, we continue to focus on what we know. That God made this precious little girl just as He intended. That He handpicked our family for her to be a part of of. And that regardless of what happens in the upcoming months, she will be perfect. We're trusting fully in His plan because frankly, we don't have one.

I intend to create a sister blog to this one exclusively for Eliza. Feel free to keep watch for that in coming days. 

Ans please pray with us this week. Pray for wisdom because we need these big brilliant brains at the clinic to have the greatest minds. Pray for discernment because J.B. and I need to have the greatest hearts in knowing what path is best for Eliza. Pray for patience because we are so eager to understand, help, and love on this sweet girl. Pray for peace because we are both so anxious and scared for her. But especially, pray for our girl Eliza. That she will always feel loved and cherished.

{at 20 weeks}

"Because of the Lord’s great love we are not consumed, for His compassions never fail. They are new every morning; Great is Your faithfulness!" 
- Lamentations 3:22-23

1 comment:

  1. Oh Sarah,
    My heart goes out to you and JB...I will keep you guys and Eliza in my prayers. I'm sure everything will work out. God is amazing that way. I've been following you since before Jake. Thank you so much for sharing your life with us! .....Shelly