Saturday, July 7, 2018

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. 

Saturday, February 3, 2018

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.

Wednesday, December 20, 2017

Cliche New Year Reflection

2017 is coming to a close and now is the time that I, along with most people, like to reflect on the past 12 months. There is something important about taking a step back, holding the year at arms length, and giving it a once over. I'm resisting the urge to list off all the disappointments of this year - of all the unmet goals and not-even-started tasks. I constantly compare my house, my fitness, my style, and my life with people; people who seemingly have more, do more, and are more than me. So, today I'm going to deny my nature and focus on all we have accomplished. Plus, that means you'll get pictures. Because who likes a post without pictures? 

-We finished* two rooms from top to bottom. The work and time this took was more than we imagined but we are extremely happy with the results. Now to actually fill them up...
Painting is the best part of any project. 
*The closets are sans shelves and doors, but who really cares about closets...

-We traveled a bit, Josh more than me. We took a long weekend to Kansas City for some family fun and lots of beer. It was our first time traveling with Link, and it was a different ballgame. In September, Josh and I headed west and had quite the adventure. And Josh traveled all over the country for "work".
Kansas City, Boulevard Brewing Co

Arches National Park

Backpacking the Ozark National Forest
Alta Peak in Sequoia National Park
Long's Peak-Josh's first 14'er

-Link got out of diapers, out of his crib, and turned 2. So, basically, he's leaving for college soon. 

-We made it three long, fast, bittersweet years without Olivia. This may have been our year's biggest accomplishment yet.

-My doctor finally gave me the clear that I am cancer-free. I'm still getting monitored every few months, but currently no more tests are in my future. Hip hip hooray! We celebrated the news with ice cream.

I'm sad to see 2017 go; it was very good to us. But I'm eager to see what 2018 has in store.

Tuesday, August 8, 2017

Lesson 136: Timelines are relative

Well, howdy stranger. Long time, no update! 

So, news flash: Renovations apparently take longer than expected. 

Our original time frame was to have the upstairs hallway and all three bedrooms completed (read: demo, electrical, drywall, paint, etc.) by June. Looking back now, that goal was truly comical. Because, as of today, we only have one room completed. You read that right. It took us over four months to finish one. freaking. room. 

We knew that this first room would be our "teaching room." Where we would go slow, learn how to change out the dated wiring, and see if drywalling was really as hard as people warned. But we never imagined how long it would actually take.

But let's back up a bit and re-orient you to the layout of the house. If you recall from the house tour, our house is split level with the bedrooms upstairs. In the image below, the "kid's bedroom" is the room we decided to renovate first. I don't understand the biological desire to insure your children have it better than you. 

We began the demolition in mid-March and it took us the rest of the month before the electrical was completed.  When we tore down the drywall and paneling we discovered lots of strange decisions previous owners made. Exhibit A: The east wall (wall on the right) we believe used to be a half wall, joining the now two bedrooms. It has paneling halfway down, which due to stupidity on their part we were required to leave.  

Exhibit A:
View from closet

View from doorway

Link saw us stand, arms crossed, staring at the walls and each other too many times to count. We were often baffled at what we uncovered throughout this process. I'm that much more apprehensive about what the rest of the house has to tell us. 

Once we stripped down the walls, we had to deal with this mess. 

This is old, outdated wiring from the 60's and every electrician that saw this shook their head in disbelief. The system is known as a "Low Voltage Switch System." This was apparently supposed to be the big new thing back then but never took off. You can see why.

I won't bother you with the details about this debacle, but if you find yourself having trouble falling asleep at night, just Google it. You'll be out in seconds.

This system is non-compatible with modern switches, so instead of dealing with strange switches and wiring the nightmare of a breaker box, we decided to update it. Through tons of online research and trusty ole' YouTube, Josh figured out how to remedy this disaster. Which essentially consisted of ripping out old switches, wiring, and relay boxes.

This room was utter chaos for so long. Luckily, a board propped against the doorway was all that was needed to deter Link from being too curious. Maybe hazardous living conditions is just what he thinks is normal? 

Such a great helper. Bubble wrap only served as a distraction for a short time; power drills and screw drivers are like candy to a toddler. 

Josh's trouble shooting and determination was impressive to see as he had to refer back to some old electrical engineering concepts he hoped to never need. 

I have never been so happy to have a ceiling fan and light. To walk into a room and just flip a switch felt like a luxury that we once took for granted. Now, 10 months after buying this house, we felt like we had arrived. 

Except for the little things, like walls and doors. But that's for the next post. Stay tuned!

Monday, March 13, 2017

Vegan for the un-vegan

For the past several years my eyes have been opened to the world of veganism. Much to my family's dismay, my cooking has slowly evolved from Pioneer Woman (Hello chicken fried steak!) to Oh She Glows (Hello Buddah Bowls!). Meat and dairy take up little space in my fridge (read: Josh) and my veggie and fruit drawers are packed full.

People are curious but skeptical of my strange diet, constantly asking, "So what do you even eat." My response, "Everything!" Seriously, you can make any dish meatless and dairy free. It can take a bit more effort but the end result is always fabulous (unless you just botch the recipe, like I often do). With the internet at your finger tips and wise vegan friends, there are limitless options and recipes.

I wanted to share some of my favorite vegan recipes that are true crowd pleasers. So, if you are looking to dip your tongues into some meat/dairy-less options, give these a try. I promise they will be yummy in your tummy!

Go a head a give it a whirl. Vegan food is much more than salad and fruit. Since focusing on plant-based foods I eat things with more favors and variety than ever before! Plus, any lifestyle that includes french fries is a winner in my book.