Diagnosis: Survival.

Here's an update.

A beautiful update.

Around 6 AM this morning we left and headed for our follow up ultrasound in Jackson. A dear friend from church offered to drive us so we wouldn't have to face the unknown by ourselves. We drove about an hour and a half to arrive nearly an hour early. (Have I ever mentioned I am an awfully punctual person?) We paced around the medical office building, we twiddled our thumbs, and occasionally let out rather loud, anxious sighs.

We were nervous.

They opened the waiting room around 8 AM and let us come in and sit down. Sitting didn't help anything. Magazine didn't distract me either. I started to shake. And on more than one occasion told Justin I didn't want to do it. I didn't want it confirmed.

I didn't want to know for sure. 

We were called back and I was instructed to go empty my bladder, take my pants off, and cover up with a sheet - the ultrasound tech would be in shortly. And she was. She came right in. She checked my cervix and then proceeded to drizzle warm ultrasound gel on my 18 week tummy.

She scanned for what seemed like forever, but I couldn't look at the monitor. Every out-of-the-corner-of-my-eye glance made me fall deeper in love with this helpless, beautiful, active little boy, and it also made me sad. Thirty minutes later, she was finished. She announced the doctor would be in shortly and would want to take a look at a few things.

So we waited.

A man that looked like a gray-haired hippy with a long beard and a shaggy pony-tail walked in the room, introduced himself, and began looking at pictures. He then told the nurse he wanted to look at the right foot. They looked at it for what seemed like 10 minutes.

Then he wanted to look at the brain. In detail.

And the spine.

Then a specific spot on the spine.

Then they zoomed in, found a different angle, and zoomed in some more.

That's when he quietly said, "There's the Spina Bifida. Mark it."

The scan came to a close shortly thereafter. He sat down and said, "Casie, you can go get dressed. We think it is Spina Bifida and we will discuss what that means when you get back."

In no time I was back, sitting anxiously beside Justin as he held my hand ever so tightly.

The doctor began talking about all sorts of things. He talked about statistics and folic acid. About c-sections and surgeries;  shunts in the brain and walking canes. He discussed possible paralysis and catheters. But most importantly, the only thing that mattered, he discussed LIFE.

He told us we were having a wonderfully unique little boy. One that we're going to get to love, and hug, and kiss, and rock, and change dirty diapers.

Joyful news! Brother's spina bifida is in the best possible spot it can be. It is located just above the tail bone, way down at the bottom of his spine, which is awesome!

There is fluid build up in the brain, but they will continue to monitor it throughout my pregnancy. Shortly after birth, the doctors will place a shunt in his head that routes the excess fluids to their proper places, easing the pressure on the brain.

They are scheduling a c-section for 36-37 weeks, as to avoid any contractions. (Strong, prolonged contractions can push amniotic fluid into the open area on the spine, causing more nerve damage and increasing the risk for infection.)

Our doctor was kind. Patient. WONDERFUL. He answered every question we had. He was straight forward. He was positive! He told us everything was going to be just fine.

We're not out of the woods yet. We still have quite the journey to make, but it will be a joyful journey. One that will be filled with stress and decisions and a lot of medical opinions, but we will rejoice! We are rejoicing!

Please continue to pray for us and Little Brother. Complications are likely to arise and stressful times are sure to come, but we stand strong in the Lord - as he, clearly, is still in the business of working miracles!

Glory be to God!

Brokenhearted and Blessed.

Thank you! Thank you! From the bottom of our hearts, we thank you for the outcry of love and support and prayers that have been sent our way and up to Heaven on our behalf. We're hurting and we're crying, but as strange of a feeling it is to have in a time such as this, Justin and I can not help but feel anything less than blessed.

We are blessed to have such a support system that knows how to love us.  You guys know when to call and you know when texts are all we need. You know prayer changes everything, and you have all reminded us of that so beautifully.

We are also thankful to have an energetic one year old that loves to give kisses and hugs. Her tender spirit shines through as she knows just how to lighten her mommy's heart. If our home wasn't filled with the laughter and love that this little girl provides, our days would be gloomy and much harder to face.

Jeremiah 29:11

^'' For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Our prayer is that our faith shines through. That we allow God the chance to work a miracle, because our God is still in the business of working miracles. And if that miracle be that we hold our beautiful baby and get to love on him for only a few hours, we pray we can see the miracle in that.

In the darkest of times, when it all seems more than we can take, we are assured of His love for us and His overwhelming desire to provide the best for His children. So, we know God answers prayer. And we know that He is our ultimate YES! God! Even when it seems like He is staring us in the face leaving us with a big, fat, ugly 'NO!', He is gently whispering, in a still small voice, 'Yes, my child, yes. For I know what I have planned for you, and it is far greater, and bigger, and better than anything you can think to ask me for. So, yes. I love you. Yes, I will provide for you. Yes, I am all you need."

You, sweet friends, have reminded us of verses that have helped settle our breaking hearts. And we thank you. Here are just a few:

Psalms 34:18
"The Lord is close to the brokenhearted and saves those who are crushed in spirit."

Isaiah 41:10, 15-16
"Do not fear, for I am with you. Do not be dismayed, for I am your God. I will strengthen you, and help you. I will uphold you with my righteous right hand."

15 "See, I will make you into a threshing sledge, new and sharp, with many teeth. You will thresh the mountains and crush them, and reduce the hills to chaff. 16 You will winnow them, the wind will pick them up, and a gale will blow them away."

So let's crush some mountains. Let's destroy any obstacle that gets in our way. Let's have faith to let our God work in a way that only he can.

Please continue to pray with us. You have all been so wonderful, and can not thank you enough.

(One post down explains it all. Title:The news you don't want to hear. )

The news you don't want to hear.

Yesterday, to put it lightly, was not a good day for us. And now looking into the future, I stand to gather that we may face a few more that are equally as intolerable.

Two weeks ago, Justin and I went in for an early ultrasound to see if we could tell Baby #2's gender and just to take a peek. For some reason, even though I was only 15 1/2 weeks, the ultrasound tech decided to take measurements of Baby's brain, and found an abnormality. Although scared, we were slightly comforted by the idea that at this early stage it is still prime time for baby brain development and it could be just a fluke.

As we left, we were scheduled for a repeat ultrasound with a different sonographer for two weeks.

Yesterday was two weeks.

Going into the doctor's office yesterday afternoon, Justin and I had in the back of our minds and felt certain that everything was going to look great, and we were having a perfectly healthy baby.

The ultrasound started, we held hands.  Baby #2 cooperated and showed us all of his boy parts and even waved a few times. I prayed silently as tears ran down my cheeks.

Then I asked. I asked the question that I asked a dozen times before when I was pregnant with Ellery. "Does everything look okay?"

The ultrasound tech slowly put down her magic wand, leaned in closely to show as much sincere sympathy as possible, and said, "I know this is not what you want to hear, (Justin squeezed my hand) but I do see an abnormality in his head, so I am going to take it piece by piece and have a good look at everything so we can figure out what is going on."

She took pictures of his spine, of his heart, and of his brain. There were leg pictures and feet pictures, stomach pictures, and neck pictures. While she was taking pictures, I was crying. Sobbing really. I didn't ask anymore questions.

We were special enough to bypass the waiting room and be escorted directly to the room where the doctor would meet with us. We didn't wait long, but the wait felt like an eternity. My doctor came in with a face that said it all. Her words (and this is where it gets a little blurry for me, so Justin has to help me out), "I am so sorry you guys. This doesn't look good."

She proceeded to explain what appeared to be happening in the ultrasound pictures. The baby's brain seems to be sliding into the back of its head and resting in the spinal cavity. The spine appears to be opening up to let the brain slide even farther down. This is called Arnold-Chiari Malformation. There also appears to be several other defects in different organs and parts of the body.

Then Justin asked the loaded question, "So what does this mean?"

Then come words that I'll never forget, "This is something we see in textbooks. We just don't see this very often in real life. With a condition like this, we see many things that can go wrong.  The spine may not develop normally, resulting in a baby born without legs. Neurological and respiratory problems will usually accompany, making the baby incompatible with life. It may, at best, live 24 hours after birth."

Here's where I really lost it. After the abnormality was confirmed, we were thinking Down syndrome or some other syndrome or defect, but no where in our mind did we think our baby would not survive.

So here we are.

That's all we know.

We have an 8:30 AM appointment with a specialist in Jackson, MS to confirm and to talk about what comes next.

We are nowhere strong enough to do this alone, but in the hands of our Father, we can overcome anything and use it for his glory. This is our prayer. We pray for strength in the days ahead, as we make difficult decisions and hear news that is likely to feel as if it is more than we can bear. We ask for you to pray with us.

12 Month Post. Happy Birthday!

Happy Birthday, sweet girl! 

My Little is ONE! 

I can't believe it. Some days it seems as if she's always been a part of our family, and other days, it is as if I just left that hospital room - where the most intense, loving, and meaningful experiences, so far in life, were created.

Our days are happier. Our hours, sweeter. Our bundle of energy leaves us exhausted in the most precious sense of the word. 

 

 Ellery had a grand ole time at her party.

She danced. And played. And clapped. And ran and ran and ran around. She giggled. And squealed. 

 And ATE CAKE.

She wasn't sure about it at first.

She thought it best to remove the candle first. 

Then someone put her iced finger in her mouth.

And decided it wasn't half bad.

So she ate. 

And ate.

Until I finally decided she needed to stop before the sugar induced tummy ache set in.

She loved it. Every minute.

Things she doing:
-She'll call "Cocoa', our friend's cat, by name.
-Sits, when we say 'sit'. (And preforms a lot of other commands.)
-Brings an item when I ask for it.
-Waves good-bye and hello.
-Kisses, hugs, and high fives.
-Goes to bed around 7. Sleeps in her crib until about 1-3 AM, and then wakes up, and sleeps soundly in our bed the rest of the night.
-Weighs 23 lbs. 

Update.

Believe it or not, we're all still well and good here in Mississippi.

We've had a bad case of a broken laptop, making blogging a rather difficult task to do.

We have managed to piece it together for the time being, so now onto Ellery's 1st birthday.

My Halloween Cupcake.

Ellery decided to celebrate Halloween a little early tonight. 

As the sun began to set, we headed over to visit friends who were hosting a fun costume party for the kids - Ellery Kate loved it. 

11-month post.

You see those eyes? Those are tired eyes. Eyes from fighting naps and waking up at all hours of the night.
 

You see those legs? Those blurry legs? That's sweet Ellery running away from me. All day long.

And this? This is me letting her eat her Cheerios off of the floor, because I am that tired.

But would I trade any of it? Not a chance.

Well, maybe the waking up at all hours of the night part. I'd definitely trade that. 

Baby Ellery,

As you begin to outgrow your baby status, I find myself aching to bask in all of your precious and innocent moments. I long to wrap you up in the tightest of bear hugs, and never let you grow up.

You, sweet E, are the most fun I could have ever imagined.

 

Some things you do: 
You give kisses and high fives.
You're learning to wave, and sometimes it sounds as if you're saying bye-bye.
But, I could totally be making that up. 
You like dance to music, and your favorite thing is still Cheerios.
You babble non-stop, and will not sleep without your blanket and your pacifier.
I would guess you weigh ~23 pounds and you wear mostly 12 month clothes.

Because I thought this was funny.

Cabin Fever.

The fresh, cool autumn air brings comfort to even the smallest of hearts. 

Ellery's drama queen nature revved it's little head today in an unusual fashion. It was a clingy and extra whiny morning in our house, and nothing I did seemed to help the rotten mood she found herself in. She fought her way through naptime. She cried as I rocked her. She even fussed as she shoved a handful of Cheerios in her mouth.  Something was wrong.

After fighting it all morning, I couldn't take being cooped up any longer while there was a beautiful day waiting for us on the other side of our door.  I grabbed an oversize blanket and a sweater for E and headed out.

 It was instantaneous. Her mood change. She was a different kid.

I diagnose it: Cabin fever. 

She was bored. Bored with her toys. Bored with our grey walls. Bored with me singing "If you're happy and you know it" to her - ten times in a row.

 I needed a little fresh air, and apparently she did, too. 

    

 

Remembering to Be Still.

 

When the pitter-patter of Little's feet falls silent and her eyes close ever so slowly on Justin's chest, my heart cannot contain the love rapidly overflowing for this little person - and the person she's laying on. 

This chilly Sunday afternoon, we're all remembering to be still.

If you're wondering what we do all day...

Take a look...

Since Little is pretty interactive now - by that I mean, getting into everything she's not supposed to - I've had to get pretty creative with our days. No more of this sitting in one place while I shake a rattle in front of her face business, no way.  Boy, do I miss those days! Sweet, innocent days. (Why yes, I am wearing my rose colored glasses as I type! How did you know?)

Recently we've tried to go on as many play dates as possible, take trips to the park, and occasionally visit the church nursery. They say interaction with peers does a kid good, right? Well, as long as her peers have mommies like the ones I've found, I think it does a kid's momma good too!

But there are days that we stay home, too. Many, many days that we stay home. And on days when all we have to do is look at each other, and the dishes, and the laundry, and the floor that needs vacuuming, our house can seem a little boring and mundane. Just saying. When daddy's at work and Ellery is begging for something besides her zebra and a magazine to chew on, Pinterest can show an unforeseen productive side.

One night, after the kiddo was in bed, when I should have been sleeping, I let myself get lost in the DIY/craft section, and found a website that got my creative juices going. It listed activities by age appropriateness, and I thought I was in internet heaven.  I swear, I was like a college freshman who just found out she was failing, I was taking notes, non-stop. With my pen going a mile a minute, I wrote down activity, after activity, after recipe for homemade finger paint. 

Bucket o' Rice:

She loved it. LOVED it, but then tried to stand up and slipped on the rice, resulting in a busted lip. Oh well. Good try, though, right?

And she only ate about 2 handfuls. I was only briefly worried about her ending up like the birds who died after eating wedding rice.

 

Paper Wads.

Oh, Ellery loves paper. In any form. It's pretty much her best friend. So, after this activity, I'm quite certain she thought I was the coolest mom ever! She was entertained for quite a while. Paper, paper, MORE paper!

 
Homemade finger paint:
4 Tablespoons Sugar
1/2 cup cornstarch
2 cups water
food coloring

I'm sure you can find a better recipe than this one if you're looking to actually paint a picture, but boy did Ellery enjoy getting her hands (and feet and face and every other inch of her body) messy with this one!

My Ellie in Pictures.