Arrow's name / Cincy update December 27 2015, 15 Comments

(Keep reading for an update at the end:)

Arrow Brye.

How in the world did we land on that name many have asked.  Well, let me tell you:) This might not be my best explanation or writing as I am very sleep deprived and hopped up on sugar cookies and caffeine.  I am also working against Arrow's clock!  So ready, set, write!

It's no secret, the more kids you have the harder it is to come up with names.  I was about 13 weeks pregnant or so when I started to really think about "the list".  I am the brainstormer and thinker when naming our kids is concerned.  Justin is the reactor and likes to veto many of my ideas without offering any other suggestions in return. This has been the pattern for each kid;) 

So, I began my brainstorming.  I wanted to have something that was tied to the family.  I was thinking of boy's names this particular day and wondering how I could incorporate my brothers, especially Aaron, since I had used Ryan's middle name for Bryer (Michael).  "Arrow" was a nickname we had for Aaron growing up and I remember my mom writing it on many of his birthday cards among other things.  I wrote it down on my "list" as it fit two criteria 1) Unique, but not bizarre. 2) Meaningful.  As with any good brainstorming session, I kept on moving and churning out ideas and didn't think too much more about it.

Later, I shared my new list with Justin and highlighted Arrow seeking his opinion.

"Um, no thank you."  He said flatly.  

I figured.

If you recall, June 2015 was a very rainy month in central Ohio.  We must have seen 10 rainbows, which was super fun considering Remy's love for them and the significance they hold in our faith, but also how they tie back to Bryer.  See (here) for one such example.  It was sometime during this month I read the kids a story from their Jesus Storybook Bible as we typically did before bed, and they surprisingly agreed on Noah and the Ark.  

As I read it aloud that night, this children's book version, it touched me differently than it every had before.  

I had been having some anxiety and varying emotions about the pregnancy in general as most mama's do in the beginning just hoping and praying everything would be ok and healthy. The words of the story that night seemed to lift off the page in a new way and brought me a fresh layer of comfort.  I felt assured we wouldn't have another storm like Bryer.  Not only that, but I was left completely struck by the phrasing and illustration.

Here are some excerpts via photo.  Give it a read, it will help things make sense:)

Like a mighty warrior, God hung His war bow in the sky promising never to turn his wrath on the world in such a way again, but instead His bow pointed to the heart of heaven.    

An arrow pointed to Jesus.

It just all fit together so perfectly.  His bow hung upside down where the storm meets the sun, naturally meaning the arrow in His bow points to the heart of heaven.  Not only do I love the thought of Arrow's life pointing to Jesus, but peel it back a little deeper and it's a beautiful illustration of the foundation of our Faith…our Salvation…our Hope.  God's wrath would be satisfied not toward us, but through the sacrifice of His one and only son.  

I shared this with Justin the next day and how it moved me so.  I told him this baby could be our Arrow in the rainbow...pointing to Jesus and reminding us of our eternal hope.  He was listening.  

A couple weeks later, my Mom calls me. She was nervously excited to tell me about the baby's quilt material she had found and already purchased.  That's the part she was nervous about..she had already bought it and it was on clearance, thus un-returnable.  Mom makes a quilt for each of her grandchildren.  For some reason the night before she couldn't sleep and was up at 3am looking at fabric on her phone.  She found a pattern and material she loved and was moved to make the purchase.  However, she was unsure if I'd be as in love with it.  I had not shared with her my thoughts on the name Arrow or anything surrounding the name. 

She hem-hawed around…"Well, I really, really like it…but it's different…and well I just don't know if you will feel the same.. "  

"Mom, just tell me what it is!"

"Well, the pattern consists of arrows….and the binding is actually rainbow colors…and there are some flecks of rainbow colors on the ends of the arrows."  

(Long pause)

"Seriously?" I questioned.

"Yes, seriously.  I think that could work for either gender don't you?  I mean, I know how significant rainbows are to you…but wasn't sure how you'd feel about arrows."

"I think it will be perfect, Mom." I said smiling through the phone.

I hung up.  Wow.  That was crazy.  God seemed to pretty much be hitting me over the head with our name.

I shared this with Justin.  He was pretty much speechless.

Time went on and these little confirmations and signs kept popping up.  Arrows and rainbows were prevalent.

An Easter rainbow:

April 5, 2015 was Easter Sunday which ended up being Arrow's day of conception (we know this due to some fertility issues).  I was washing the dishes and when I looked up there was a rainbow across the face of "Bryer" or rather the little fabric stuffed Bryer that sits above the sink.  I posted this pic to FB that day.

March 4 Facebook post -  I posted this a month before Arrow was conceived and the name wasn't even on my radar.  Seems prophetic no? 

My friend drops off a book for encouragement with a card in November.  My name is underlined by an Arrow.  

Noah's Ark kept popping up left and right.  Two friends randomly gave me Noah's Ark books mid-summer 2015.  My best friend from NC sent the Noah's Ark Veggie Tales video in the mail in October.  

October 11, 2015, 2 days after they had found spots on the baby's brain and if you've read my blog, I was not in a good place at that point.  We were at Panera for a sign making party in support of the marathon.  I was ordering my food and noticed the cashier had a large arrow tattoo on her forearm that pointed up.  Not a huge deal as people do have arrow tattoos.  However, when I turned around with my food to head to my seat, there was a rainbow thrown across the floor coming from the window.  

Our Bryer Song Hope shirts includes an arrow pointing up towards heaven, which happened to NOT be my novel idea, but my sister-in-law Kari's.

 

One evening in November I was looking on Etsy, while laying inverted on our ironing board trying to get baby to flip, and randomly saw the scripture Isaiah 49:1-2 on a print.

"Before I was born the LORD called me; from my mother's womb he has spoken my name.  He made my words like a sharp sword; He hid me in the shadow of His hand. He made me like a sharpened arrow; He hid me in His quiver."

ALL of that to say....It was decided that the baby's name, boy or girl would be Arrow.  Arrow Leigh for a girl and Arrow Brye for a boy.

 

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You can imagine how confused I was when the rug was pulled out from beneath us with Arrow's TS diagnosis and all that ensued.  I didn't understand.  I had felt so reassured that everything would be ok and then the bottom completely dropped out…or so I thought.  

As we have moved through the beginning of this journey, I am starting to see how He actually has given us provision and a harbor of safety in this storm.  "But in the middle of the huge storm, in the crashing waves, in the thunder and lighting - through it all - God was with them."  Perhaps this is part of the message I was supposed to be receiving all along.  Not that there wouldn't be another storm, but that we would be held in safety.

Tuberous Sclerosis would not even be on our radar at this point in Arrow's life had they not found those rhabdomyomas in his heart or spots on his brain in utero. TS typically isn't diagnosed so early, but rather once a child starts displaying major symptoms which can be quite sometime after birth.  We would have had Arrow and not known a thing was wrong with him.  He is doing everything he is supposed to be doing at this point.  We wouldn't not have been on alert.

From 16 weeks pregnant on, I was going to Maternal Fetal Medicine regularly for cervix checks as it seemed mine was shortening, which can be problematic and cause pre-mature delivery. It caused me to get ultrasounds every 2 weeks.  Then suddenly it just resolved itself.  Jumping one visit from a measurement of 2.3 to 4 (which is considered completely normal).  The doctor even noted how strange that was and how typically they don't see the measurement head in THAT direction but rather the opposite direction.  It was never a concern again.  BUT this all caused me to keep going for ultrasounds which allowed them to find the heart tumors and spots on the brain.  

Because we had this advanced knowledge we were able to establish ourselves with the BEST doctor prior to delivery and devise a plan.  Because we knew this ahead of time, I was on alert and when I noticed some very, very subtle suspicious movements the day after we got discharged from Nationwide, I called Cincy and got our appointment moved up a week sooner.

This leads me to a short Cincy update as many have been asking.

We took Arrow down at 8 days old as I had seen some suspicious movements. To make a long story short, he had an EEG that morning followed by a TS clinic visit with Dr. Franz.  Dr. Franz read the EEG and said we were right to bring him in when we did.  He was seeing some abnormal activity on the EEG…almost like pre-seizure activity.  It was few and far between, but if left alone it would certainly develop into full seizures.  He said his brain is not damaged and he is still very optimistic for his development because we are catching this so early and able to be so proactive.  The sooner you treat seizures the better because they've not had a chance to lay down such deep patterns that after awhile are harder to get under control.  He started him on a medication that is supposed to shut down this activity with the goal of normalizing his EEG.  

We started the medicine 2 days later after receiving it in the mail.  There was some dosing issues in the beginning, but we figured that out.  We haven't seen anything else suspicious.  We are to schedule a follow up EEG within 2 weeks and then return to Cincy on January 13th for a brain MRI and another clinic visit with Dr. Franz.  

Can you see God's provision in all of that??  I am so thankful.  So very thankful. We are in the very beginning of managing this disease, but I can honestly say I am living more so in daily praise than daily fear of the future.  We are required to rely daily on God, there is just no other way around it.  I count that as a gift.  What we thought might be the worst thing is actually turning out to be the best thing. Arrow, we love you so much!

Here are the prayer requests:

1. A complete shut down of seizure activity and a normal follow-up EEG
2. Better than expected news from the brain MRI and his safety during the scan January 13th.  He will be sedated and intubated which is a big deal for a little guy.
3. His continued growth and development and that God would place his hand of protection over his developing brain and allow for him to thrive.

Lastly, I want to share a little praise that totally made my Christmas.  Arrow's first visit to the pediatrician at 10 days old had him weighing 7# which was still not up to his 7#2oz birth weight.  Dr. Doherty wanted him to be gaining 1 oz a day and he wasn't up to that just yet.  So, he scheduled him for a follow-up weight check on Christmas Eve morning.  The goal was 1 oz a day and I'm not going to lie, I was feeling a bit stressed about this. 

Well, Arrow gained 13 oz in 6 days! I almost cried right there in the office.  I guess you'd have to understand the toil, discouragement and failure I felt with Bryer and his inability to gain weight and grow. We'd be thrilled with 15 grams of weight gain a day, but often times found Bryer losing weight instead.  To see that Arrow was gaining more than 2 ounces a day and thriving with breastfeeding, something Bryer could never quite do, made me ONE HAPPY MAMA!  Thank you, Lord.  He continues to be a little piggy and feels heavier each time I lift him from his crib:)

Speaking of feeding that little pig, he is screeching for me!  So, that's all for now. Thank you for all the prayers and concern over our new little Arrow. We urge you to keep the prayers coming!

xoxo