Friday, December 16, 2016

Mawage

"Mawage is what bwings us together today."


If you have no idea what this all means, I will seriously have to reconsider my thoughts about you.


It's classic lines from The Princess Bride, silly.

I speak of mawage because today is Beau and I's 22nd wedding anniversary. Yep, 22 years.

We have had rough patches throughout those 22 years, but nothing compares to what we have been going through the past year, actually year and a half.

I always thought marriage was pretty easy. Really, it has been for us most of the time.
Sure ... there's the annoying stuff that you have to deal with in any relationship. And, that's what you do ... you just deal with it.
But, then there's big life-changing stuff that you never in a million years imagined you would have to go through. That's when you have to lean on each other the most. We've had to do that, especially this last year. We're really all each other has had.
I fall apart most of the time. Beau is strong, holds my hand, tells me everything will be okay.
Beau falls apart. I hold his hand, tell him we'll make it through this.

Now, let me be totally honest with you. It's been the toughest year on our marriage.
When life is gut-wrenchingly painful, emotions run high. Everything we deal with internally affects what happens on the outside. Things get said. We hurt each other's feelings.
We also don't get much time to spend together like we used to ... the date nights, the boring nights on the couch watching TV, cooking together in the kitchen, alone time, and you know ... the intimate stuff married people need to do. Yeah, all that stuff becomes last on the list.
This contributes to the pain, the hurt, the heartbreak. The next thing you know, you're in an argument over the most inconsequential issue ever.
Wait ... I forgot one of the most important factors in circumstances like these ... exhaustion.
Exhaustion can hurt a marriage.
We have tried our best to take as much time alone as humanly possible, but, unfortunately with our life right now, it's ridiculously hard.

So, we try to adjust.
We take moments.
A walk to Subway for a sandwich while La Petite Belle is asleep has become our version of dates.

It was getting easier once we got discharged. We were finally able to simply sleep in the same bed again. But, now we find ourselves back inpatient and back to our old routines.

Here's what I've learned about our marriage this year:
1. There is no other person whom I can lean on more than my husband. He's really the rock of our family. He knows what to say. He knows how to handle things. I feel safe when he's around.
2. We make a great team. We have had to truly work together to care for La Petite Belle. We know what works and what doesn't, and we pretty much have it down to a science. I've come to the realization that God had prepared us for this moment long ago when we worked together for so long.
3. We need time to focus on us. A marriage cannot survive when you are totally preoccupied 24/7 with other things. Granted, we've had to be most of the time. But, we have made as much of an effort as we could to remind ourselves of how this family even got started. It was us. We have to take time for us.

With all that said, there is no one else I can imagine standing beside me through this journey. Beau is an amazing dad and husband. The way he passionately loves his family is incredible. 

This anniversary we spend at Texas Children's Hospital. Not my first choice, but just the way our week happened. I'm okay about it. Maybe we'll grab some Chick-fil-a or take a walk to Starbuck's. I will definitely take a rain check on our anniversary celebration. There will definitely be a date in our near future.

Happy Anniversary, you amazing man! I love you more and more.

As far as an update on our girl goes, we are still inpatient. This is our fourth admittance since we were originally discharged before Thanksgiving.

Fevers are what keep putting us back in the hospital. Each time, blood cultures are drawn and the doctors look for infection, whether it be bacterial, viral, or fungal. And, each time, La Petite Belle's blood cultures come back negative. She will go a couple of days without a fever and then it spikes again.And, this whole process repeats.

Doctors suspected some type of fungal infection. A lot of times these are the hardest to diagnose and treat. A CT scan was done of La Petite Belle's chest and sinuses. Because some of the scan was vague, the doctors wanted the ENT doctors to explore her sinuses and take samples for biopsies. That was done on Wednesday. As of today, all of her cultures continue to be negative and the doctor who performed the sinus procedure said that La Petite Belle's sinuses looked pretty good to him. She did have a lot of inflammation (acute sinusitis), and he opened up her sinuses to help her breathe. We still have to wait on the final pathology results from the procedure, but everyone is optimistic. La Petite Belle is being started on an antibiotic specifically for acute sinusitis. 

The other issue we seem to be dealing with is hemolysis, where La Petite Belle is breaking down her own red blood cells, so she is not able to hold on to her hemoglobin very long. She has been requiring way more blood transfusions than she has been before. The doctors aren't totally sure why this is happening, but it has happened in the past and corrected itself. It does occur sometimes due to the body fighting a virus or infection. That's the thought right now. The doctors have given her a dose of another immune suppressant aimed at stopping the production of the antibody that is attacking her red blood cells. Now, we just have to wait, yet again, to see if she will start to hold her red blood cells again.

She's been in a lot of sinus pain and headaches due to the procedure and been able to get some doses of Morphine to help. And, of course, she's not a fan of being back in the hospital, especially not on our "home" BMT floor. There were no rooms so we're stuck on another floor.

We're praying that La Petite Belle will, not only feel better, but will be able to be out of the hospital before Tuesday when K Belle comes home from Australia. Hoping we will have an uneventful, family Christmas at home here in our Houston apartment.

Thank you for continuously praying for our sweet girl's complete healing. We appreciate your prayers, love, and support.

If you would like to financially support Katie's (aka La Petite Belle) journey to healing, you can find more information here: www.gofundme.com/Katieg.  All funds go to cover medical bills and expenses.


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