Not The Update I Planned To Share

This story doesn't have a clear beginning and we are unsure about it's end, so I'll just jump right in to the middle.

We are 21 weeks pregnant with a little boy who we so eagerly desire. 12 days ago we found out that our little one has a neural tube defect - an opening in his spine- Spina Bifida. It has been a whirlwind ever since. To say we are shocked and shaken is an understatement. 

According to specialists at UAMS in Little Rock, our champ has a "lower lumbar, predominately sacral neural tube deficit, most consistent with myelomengingocele." This is the most common yet most severe form of Spina Bifida. 

In Layman's terms: A little bit of the baby's spinal cord and nerves protrude through an opening in the spine into a sac that's visible on the back. Because of this opening in the spinal cord, the fluid around the nervous system is lost; this causes the brain to be positioned further down into the spinal column than normal, which is called Chiari II malformation. This is also resulting in the ventricles of his brain to be mildly dilated.  

The spectrum of deficits is vast for babies, children, and adults with Spina Bifida. No doctor has given us concrete information on what to expect, but what we do know is that his lesion is low (the lower the better, if there is any "better" in this situation), and he kicks up a storm during his ultrasounds. This doesn't give us anything definitive, but they are good things to note. 

We are scared of so many things. To list them all would be exhausting. And to write them down may give them more power than they already have. So we are trying to focus on what we can DO. And we have a few options.

Option 1: The baby will stay cooking in my belly for as long as possible, 38+ weeks, as long has his ventricles don't dilate too much. They will be watching this closely. I will have a c-section at UAMS (a vaginal delivery is too dangerous for this guy, as it could further damage the exposed spinal cord) and he will be immediately sent to Children's Hospital where he will have surgery to repair the opening. This surgery will happen 1-2 days after birth, as long as he is medically stable for surgery. He may then need a subsequent surgery to place a shunt in his brain, if the spinal fluid can't self regulate - which happens in 80% of cases. 

Option 2: Go to Memorial Hermann Medical Hospital in Houston to undergo in-utero repair of the opening. The doctors would open my uterus, repair the baby's opening, and sew me back up. This would happen around the time I'm 25 weeks pregnant, and I would possibly remain in Houston for the remainder of my pregnancy. 

In-utero repair (option 2) would be our first choice, as research suggests it leads to improved outcomes, decreased need for shunts, and improved leg function compared to after-birth repair. But, here's the catch: I have a completely random, unrelated condition called placenta previa. This just means my placenta is currently in the wrong place and eliminates me as a candidate. F*** you, placenta! Seriously. It is possible that my placenta may move. But since in-utero surgery must happen before 26 weeks, we have a small window for that to happen.

On July 26th, at 23 weeks pregnant, we will have another ultrasound to see if my placenta has moved. Here are the specific prayer requests for that appointment:

-That my placenta has completely moved. Like, get out of the freaking way. And that I become a candidate for surgery.

-That baby's ventricles are stable; that they haven't dilated anymore.

I hate to admit it, but fear has been stealing our joy. It is a constant battle to keep myself from spiraling into dark places. I'm angry, frustrated, sad, and overwhelmed. Haven't we been through enough?! Haven't we earned our fair share of heartache?! Why, oh why is this happening?! We can't take anymore.

Please lift us up as we try to take it a moment at a time. 

4 Years of a New Future

I've met many people over the past 4 years. Many know our story; many do not. Countless people lived through our journey with us- remembering when they heard the news and sharing in our grief over the years. And more were not in our lives, but have since taken on our sorrow as their own and love a little girl they never met.

So, if you don't know, on February 5th, four years ago, our daughter's heart stopped beating. And, after carrying our sweet girl over 37 weeks, I delivered her, we held her, then had to say goodbye. That day, 1460 days ago, left me forever broken. There is a hole in me that will never be filled this side of heaven. The future that we thought was in front of us, wasn't. And every day I have to navigate our new future. A future of one less child. A future without Lincoln's big sister. A future where our sweet Olivia is in Jesus' arms, not mine.

Every year, as this time silently and heavily approaches, I prepare myself. I withdraw, huddle down, and brace for the waves. This weekend is no different. I expected that our little family would cry, relive the time we had with her, and give ourselves lots of grace to do, say, and feel anything we need. Alone, our world stops.

But I forgot.

I forgot that I have people who pause their world and remember. That promised we would never grieve her alone. That, after 4 years, they continue to say We Remember. We hurt with and for you. We are here. You are not alone.

I am not alone. I wasn't alone in that doctor's office. I wasn't alone in that hospital room. I wasn't alone when we returned home to that silent, empty house. And I'm not alone today. I don't know why I keep forgetting that I'm not alone. But I'm thankful for friends who remind me.