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.

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.

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. 

before

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!

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!

No Bake Brownies with Chocolate Ganache

Hummus (Garbanzo Bean) Soup

General Tso Tofu Stir fry

Sun-dried tomato, Mushroom, Spinach Tofu Quiche 

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. 

Update on me: Part 2

Read Part 1 before proceeding to see where I've been over the past two years!

During those 2 years it was easy to forget that I had cancer. (Well, we assumed I had a small tumor somewhere because my Tg number wasn't "0", but we just didn't know where). One thing that I always saw as a negative in myself is that I'm very absorbed in my immediate surroundings. My mind is focused on what is right in front of me: My day-to-day responsibilities, work, husband, caring for a newborn. I always saw it as a weakness. I'm a terrible long-distance friend (if I don't see you regularly it's hard to think about you) and I easily forget past events/conversations/people (who has time to mull over the past when I've got laundry to do!). I'm too focused on the now.

But what I've always seen as a weakness actually worked to my advantage. I honestly rarely thought about the disease and just lived my life. I was only consumed with worry and anxiousness on the days I went for my monthly blood draws. But once I got the results, I went on my merry way. Completely peaceful and unaware of what was going on inside my body.

But after those blissful two years, my time was up. Last October my Tg number skyrocketed to 20 and my doctor said, "No more." He was concerned that the cancer had grown and we needed to investigate immediately. Ultrasounds of my neck revealed nothing suspicious so we proceeded with a radioactive iodine scan and a CT scan of my head and neck.

I was scared. Really scared. All of the peace that was with me over the past years flew out the window and "worst case scenario" was in the forefront of my mind. It's funny how Satan can make you feel like you've learned nothing through all your trials; that you're back at square one.

At the end of October, after two weeks of a low-iodine diet, I took a small dose of radioactive iodine and was scanned head to toe. Nothing suspicious lit up, so we proceeded with a CT scan just to cover our bases. Let's cross all the T's and dot every I there is! And in December I received the best Christmas gift possible; my doctor confirmed that there was absolutely no cancer. Despite my elevated Tg numbers, there was no evidence of the disease in my body.

Talk about a dance party! Such a weight, that I didn't know existed, was lifted off my shoulders. After years of assuming I was living with cancer (stable cancer, but cancer nonetheless) I officially got the answer that I am healthy.

So where does that leave me now? I still get my blood checked regularly. And on March 13th I have a follow-up CT scan to insure, again, that there is no cancer growth. My fingers are crossed that after we get clean results we can move these appointments further and further apart. I can't wait for the day when my doctor says, "See you next year!"

Update on me: Part 1

It has been almost 3 years since I've posted about my health. When I started writing about this journey I realized there was way too much to put in just one post so I split the post in two.  It has been quite a ride, so stay with me. 

Last you heard, I finished my round of radioactive iodine treatment in April of 2014 and, besides a few "spots" (I like spots instead of cancer - less scary.) in my neck, my scan came back clear. My doctors felt the radioactive poison left in my body would continue to shrink those "spots". So while they weren't an immediate concern, my thyroid levels were still monitored every month.

When it comes to thyroid levels, things get pretty confusing. They check these levels by a simple blood draw and look specifically at the Thyroid Stimulating Hormone (TSH) and Thyroglobulin (Tg) levels. My TSH is measured to make sure it stays low. A normal TSH is .34-5.60uIU/mL. I need my levels less than .10 to keep the cancer growth suppressed. My thyroid medication is adjusted according to this number.

Tg is what the doctors use to gauge my cancer growth. It is a hormone produced only by normal and cancerous thyroid cells; since I no longer have a thyroid, the only cells that could be producing this are most likely cancerous. In a perfect world, my Tg levels would be 0.

In May of 2014, right after radiation, my Tg level was 29. Due to the radiation still in my body, that number continued to shrink for almost two years. In July 2016 it had shrunk to 7.0. Still not normal (remember, my normal is 0), but as long as that number was shrinking or stable my doctor was happy to be "actively monitoring" me. We weren't being too aggressive because I got pregnant with Lincoln, then nursed him for 12+ months. To pursue further testing would mean radiation exposure and that meant weaning, which I wasn't quite ready to do. My doctor was willing to work with our situation but I knew all along that if my numbers increased we would have to take things seriously.

During the time I was in the "active monitoring" stage I made some life style changes. I changed household and personal cleaning products to more natural, safe alternatives. I started limiting/avoiding all animal and dairy products, as science has proven that a plant-based diet is far healthier, especially when it comes to cancer and inflammatory diseases. Kris Carr became my health idol. I recommend her book to anyone interested in a holistic approach to health.

I feel that with the interventions of my doctors in 2014 and my life style changes, I was able to keep my cancer at bay for over 2 years. In those 2 years I was able to get pregnant with Lincoln and nurse him for over 12 months. I am so proud of that and thankful I was allotted that time.

But in October of 2016 that time was up.

Tune in tomorrow to get the rest of the story. Spoiler: It's good news!

A post about floor vents

This whole post is about floor vents.

Yes. Floor vents.

When you have floor vents that looked like this:

then look like this:

You give them a whole post. Because look at those beauts. 

I literally did a happy dance once we "installed" these. And the words, "They make the whole room better!", came out of my mouth. 

Who knew floor vents make that big of a difference.

And who knew a whole blog post could be dedicated to them. 

Odds and Ends

We have officially owned this house for 8 months. At first glance it doesn't look like we've done much. Besides updating the upstairs floors, what else have we been up to?

Beside chasing around this booger, a whole lot.

If you didn't guess it, this house was disgusting. So the first thing we did was clean. Inside and out. Josh made a lot of illegal trips to surrounding dumpsters during those first several months. And we practically had a fire going every weekend.

 

Fun fact: Our hot water heater busted on Night 1. After hours and hours of exhausted tinkering (and preventing our downstairs from flooding), Josh finally got the leak under control. That first weekend was spent replacing the hot water tank and tearing down the surrounding shelving. That was a fun $500 spent. 

The fridge that came with the house was the most disgusting thing I've ever seen. So we tore out some kitchen shelves to make room for a new, shiny refrigerator. If you can look past the exposed ceiling, it is the prettiest spot in the house. 

Most recently Josh has been doing a lot of work on the furnace and duct work. In the first week of December the temperature dropped to the single digits and our 15+ year old furnace decided to quit. Timely. With the help of YouTube, Josh replaced the gas valve and pilot assembly to breath new life into our ancient friend. Thus far, it has made it through the rest of winter.  

And as of this weekend Josh rerouted the main return air. The old return air was routed into the steps (see picture below), which we plan on rebuilding in the near future. 

The biggest, most expensive improvement we made is we replaced the roof! We choose a classy Black Walnut to bring out the blue in our eyes. It came with an expensive price tag, but it's well worth it not to have a leaky roof.

 And that, lady and gentleman, is what we've been up to the past 8 months.