Dear mom on diagnosis day: Spina Bifida.

Dear Mom on diagnosis day,

This post has been in my draft box for about a year. I write it. Rewrite it. Then delete it again. There are no words that can help you. No words can heal you; not today. But here's what my heart wants to tell you anyway:

You, sweet friend, are thought of everyday. You're in my thoughts. In my memories. And in my love. I think of you. 

I think of you when I remember this day.
I think of you when I look at my sweet son.
And I think of you when I look towards the future.

But today, more than anything, I love you. I love you beyond your wildest dreams. I love you because of the beauty that will come from you.

Today, two years ago, I was you.
The tears you are crying, they were my tears.
The confusion you feel, I felt it.
And the guilt. The guilt you hold in the depths of your heart, sweet mama, I know that guilt.

Was it something I did? Could I have done anything differently? These questions cut deep. They're ugly. 

But the truth is simple: my son is exactly who he is supposed to be - and yours will be, too.

Hearing the words: Your son has spina bifida, it's life changing.

You've heard the doctors talk a lot about folic acid. You've heard the statistics. You've been given your options.

Dear friend, now hear me. Hear the words that I hold close to my heart. 

I know the journey you are just now embarking on, and it's scary. It's hard. But mama, please know, it is so worth it. 

These are some dark days - these early days when everything you've been dreaming of seems to be turned upside down. 

But know, you are about to discover that your world, even upside down, is beautiful. 

You'll put on your research goggles. Your life maps will have to be revised. But the journey, this adventure through parenting,  is worth the effort, because that precious life inside of you will amaze you every step of the way. 

As my 19 month old tugs on my pants leg, signing for milk and asking for cuddles from his wheelchair, I think of you. I think of how scared you must be of wheelchairs - because that was me. 

They're unknown. They come with a stigma. 

But what if I tell you, they come with discovery, and learning, and fun? What if I tell you, they are a conversation starter, a friendship maker, a 'cool factor' on the playground? 

Our son has learned more, progressed more, laughed more in the past few months since he learned to operate his wheelchair. He is happy. He plays. He is a normal little boy who happens to have spina bifida. 

Words can't help you today, but one thing I want you to remember. When the the clouds start to dissipate and the sun starts to shine again, remember these words. 

Life doesn't end with spina bifida, a new one is just beginning. 

A hard. Crazy. Emotional. Beautiful. Loving. Unique. Worth it. Life. 

It's yours to enjoy. So enjoy it, because our kids, just like any others, are incredible. 

I love you, dear friend. 

-Casie

Because he's here, we celebrate!

'I wait for The Lord, my whole being waits, and in His word I put my hope.' Psalms 130:5

We hope, we wait, and we only find pleasure and contentment when we place our whole being in Christ our Savior and His blessed will.

It is incredible the difference a year can make. This time last year we were blissfully ignorant of the journey our God was about to reveal to us. A journey that initially left us winded and full of heartache, but has since brought more joy than one can imagine. 

In case you missed it, our journey with Elam started with this.

Then four days later, it turned into this. Praise God, it turned into this! 

This day, one year ago, I was unaware of what was to come. Unfamiliar with the details of spina bifida, never dreaming the child growing inside me would have it. 

We spent five months traveling from specialist to specialist. From Nashville to New Orleans. Month after month still uncertain what the diagnosis meant for our child. We knew a lot, but at the same time, we knew very little. 

With all that we knew, and all the more we didn't, we loved. We loved every little piece of our precious boy, and were thankful. 

Thankful for life. Thankful for hope. Thankful for spina bifida. 

You see, spina bifida doesn't just affect Elam. It is affecting me. My heart. My walk with God. And my drive to do something more. Something more than the selfish desires I get lost in. 

And I know, also, it is affecting others. Elam's life, Elam's story has reached beyond our living room, beyond our town, state and country. Lives all over have heard and prayed and have seen God move in ways only he can. And we are thankful. Thankful for the opportunity to be used as an instrument in God's perfect plan. 

This year, and every year from now on, our plan is to celebrate January 28. It's not Elam's birthday, but it is something equally as special.

It is the day we celebrate life and celebrate spina bifida. We celebrate the dark hole we were graciously pulled out of, and embrace the journey in which we were blessed. 

'For I know the plans I have for you, Elam, declares The Lord!' Jeremiah 29:11

Because he's here, we celebrate.

 Praise God, we celebrate!

Thankful.

Today I want to revisit thankfulness.

Thankfulness in the sense that, even when things are going wrong (for what seems like constantly), we remember how much we have already been given. 

I am human, I am just like you. I sometimes ask the question, "why" and maybe feel a little sorry for myself. My husband has even seen me throw a hyperventilating fit from time to time. 

That's me.

It's crazy how we can so easily get sucked into the "but that's not what I had planned" phenomenon and use that as an excuse to just sit and wallow in our own self pity. 

But you know what? That's the easy way out. That's the way for the cowardly!

And I choose not to be a coward. 

I choose to trust that my plans aren't the best for me anyway, and whatever God has in store for our family will be far more fulfilling than the uneventful, perfectly polished picture I once had of our future. 

Thankful. Today I am thankful.

I am thankful for my husband who lets me hyperventilate. 

I am thankful for my (very close to) two year old, and her spunky, independent personality. 

And I am thankful for Elam and how he continuously shows me how to see past imperfection, and teaches me to embrace it. 

Things haven't been necessarily easy for us lately, in regards to Elam's health. A few weeks ago tests showed we needed to start cathing him four times a day. We half expected this, but it still stung our hearts a little. 

Since then, he has had several reactions to several things, a UTI, and a strabismus diagnosis. All of which, in the big scheme of things, and a few years down the road, don't mean much, but in the here and now, it is a little stressful. 

Although life is chaotic, we've got it pretty good. I choose to remember that today, and not take this time for granted. 

Clubbed Feet.

(Progress after just two weeks of casts.)

I realized yesterday, as we were headed home from our 3rd visit with Ochsner's pediatric orthopedic department, that I haven't talked much about Elam's clubbed feet and the process it is going to take to correct them. 

Elam's little legs have been in the smallest of casts for the last two weeks, and had his third pair put on yesterday. They really don't seem to bother him, but it sure does make him appreciate the couple minutes he gets each week when the doctors take them off. 

The cutest movement you have ever seen comes from Elam's left leg as he wiggles it with pure excitement when it is freed from his cast. This makes my heart happy. 

The doctors have estimated around 6-8 weekly cast changes will be needed, as with each casts they are able to straighten the foot out a little more.

 After the weekly round of casts get the feet straight and flexible enough for the doctor's liking, Elam will undergo a small surgery to further loosen the tendons in the back of his feet. He will then be put back in casts for a month. 

After the month of casts, at this point I am not sure if there will then be more casting, or if then he will go straight to braces (that he will wear 24/7 for three or so months, and then at night for 4-5 years).  

It is really amazing to us to be able to see such improvement in just two weeks!

Elam Isaiah Tyson

Welcome to the world, little Elam Isaiah Tyson!

Born at 5:49 PM on June 20, 2013, weighing 7 lbs 7.6 oz and measuring 18 1/2 inches long, we are so blessed to call you our son.

30 Week Appointment.

Today was a good day. 

And it was the day I remembered I never mentioned our newest change in health care providers. 

A few weeks ago, after a visit with the University OB in Jackson, Justin and I easily decided we wanted to explore other options. 

With a little research and a lot of calling around, we landed ourselves an appointment with the Maternal Fetal Medicine OB at Ochsner Medical Center in New Orleans.  We went for an appointment four weeks ago and decided, right then and there, that this was the team of doctors we trusted with our baby. 

So, instead of our original plan to deliver in Jackson, MS, we've made the exciting switch to deliver in New Orleans. 

Today was our second visit with them. 

Justin and I were a little nervous going in to the appointment, because it seemed that every appointment since we learned of our son's spina bifida had uncovered more bad news - sometimes the news was just a little worse, and other times it made me physically ill. At our last appointment, there was no terrible news, but we found out that Little Brother's kidneys were slightly dilated, which was an indication that damage may be occurring to them due to incomplete drainage of the bladder. 

We also found that the ventricles in his brain - the areas where fluid was building up due to the tension on his spinal cord - were continuing to grow. The fluid buildup causes pressure on the brain that can damage brain tissue if it gets too high. The upper boundary for "normal" ventricles are considered to be up to 13 mm wide for boys. Little Brother's ventricles were already measuring 17 and 18 mm and had been growing at about 1 mm per week for about two months. So we were afraid to find out how large they may have gotten in the month since out last appointment.

When we were led into the ultrasound room, we were greeted by our a very nice technician. She talked us through the ultrasound step-by-step, describing every part that she was measuring and what it meant. The first surprise came when she measured Little Brother's ventricles. One of them was still measuring at 17 mm, but the other had shrunk to 12 mm! It was the first time in three months of observation that the ventricles had not gotten larger, much less shrunk. Since we were expecting his ventricles to be measuring over 20 mm by this point, this was a wonderful surprise to us! We won't know what all of this means until farther down the road, but it is definitely good news!

The second surprise that we got came when our doctor came in to review the pictures that the ultrasound technician had taken. He was the first to report that Little Brother's kidneys were slightly dilated when we visited him a month earlier, but this time they measured in at 4 mm. He told us that the upper limit for "normal" kidneys at this stage would be 7 mm, so his kidneys no longer appeared dilated - more good news!

As important as the good news that we received about Little Brother's development today was the way we were treated when we visited our new hospital. We have been seen immediately both times we have been there, and the doctors and staff treat us like we are their priority. Our doctor has a strong focus on "What does the research say?", as opposed to our previous doctors, whose driving force always seemed to be, "Well, that's the way we've always done it." 

As an example, the previous specialists that we had seen in Jackson had all insisted on a C-section to deliver at about 37 weeks. This conflicted with the research I had read about online, which almost all seemed to agree that there was no evidence of a change in the long-term prognosis for children with spina bifida that were born by a normal delivery. By contrast, our doctor in New Orleans brought up the research right away and pretty much made it clear that his preference would be for a normal, full-term delivery. "If you just want us to cut you, we'll do it," he said, "but I would really like to see you make it to 39 weeks, and unless something changes in the development of your baby, there's no reason not to do a vaginal delivery." It sure is nice to have a doctor that goes by research instead of just convenience!

Needless to say, we're ecstatic. Throughout our pregnancy, we've felt God move through peace and comfort and guidance, but now, to physically see His touch and see His love revealed to us through this display of healing is amazing! 

As we continue to pray, please rejoice with us and give all the credit to our Father who loves us so passionately, even when though we are so undeserving.  We understand that we may see all these changes back in abnormal range at our next visit, but we have faith and assurance that God knows exactly what is in store, and he will help us through whatever it is!

REJOICE!

Dwell on Joy.

Lately, when I am out running errands and I bump into someone I haven't seen in a while, or when I get that sweet, sweet phone call from an old friend, the first question I am always asked, in a concerned, very meaningful tone, is, "How are you doing?"

And to answer it in a way that I hope you all can relate to, simply put, we're doing.

We're doing great. We're doing sad. We're doing dancing, and maybe a little crying. We're doing a lot of joy, and we're doing a little bit of discouraged. We're doing baby kicks, and a normal pregnancy - that happens to be not-so-normal. 

I say it in this way to help you catch a glimpse of how our life, our sweet little family, is still the same. Yes, we occasionally feel broken, but in the next breath we feel so rejuvenated by the fresh air of spring that our worries are washed away. We're just like you. We all have fears. Heartache. Seasons we wish we didn't have to visit, but without these adventures, we would not develop into the people we are meant to be. 

And I believe that. Every word. 

Our focus is not to dwell on the fear of finances or shunts. Not to worry about Little Brother's ability to walk or run or play sports. 

Instead, when we dwell, we dwell on joy and happiness and love. We dwell on being the family that doesn't give up. So, when you see us, I hope you see these things. I hope you see the strength of our God holding us ever so tightly, because we could not dwell on these things on our own.  

Some days are harder than others, mainly due to uncertainty, but we know Little Brother is blessing our lives in ways that we cannot begin to understand. As he becomes our new normal, our eyes are opening to a whole new, beautiful world around us that we have previously so easily overlooked. 

It's a blessing, this journey we're on - one that we wouldn't have chosen on our own, leaving us thankful that we are not in control. 

Letter to Little {Brother}

Dear Little Brother,

I must start by saying how sorry I am that it has taken so long to write you your first letter. Our hearts are nothing but filled with excitement and love as we prepare for your new place in this world.

So far, our journey with you has been a little difficult - the exact opposite of the journey we took with your sister not so long ago.  But through the difficulty, we wouldn't change a thing.

We are learning more about life, and love, and the Grace of God, as each day reveals itself as another opportunity to bring Him glory.

When we first learned that there was going to be a You, we were indescribably excited. We made plans - our plans - and they all seemed to be working out perfectly. Until, everything changed about 12 weeks later. Our hearts were broken in a way we never thought they would be, as we prepared our aching souls for the fatal second opinion.

We cried. We loved. We prayed, and asked for prayer. At one point it felt as though the entire Southeast was falling on their knees, lifting our little family up in their prayers. In the midst of tragic undertones, we had hope, we felt love, and we knew we were not alone. In those dark moments, we - maybe for the first time - truly let go of our situation, because we knew we couldn't do it on our own, and let God be the Almighty source we so desperately needed.

When we let go of the plans our hearts had been making for quite some time, we began to feel God moving in a way like never before. That second opinion turned out to be not-so-fatal, after all. We unexpectedly left the ultrasound with happy tears rolling down our cheeks, holding hands, as giant smiles filled our faces. We were having a perfect little boy, who just happens to have spina bifida. We were having you!

You, sweet son, are the reason for all of this. You are the reason for our all-of-a-sudden change in perspective, our change in attitude, and the reason our faith the size of a mustard seed is able to move these mountains.

We're seeing God move through your oh, so tiny, developing body. We're hearing him whisper peace to our hearts, as he reminds us that you are perfect just the way he is making you.

Now we are so anxiously left with the joy and excitement, and sometimes fear, of what our sweet future holds, as you help make our family so much more complete.

Always remember, every part of you is prayed for.
Always know that you are loved - for the exact person you are.
And please never forget that you are wanted, oh so desperately wanted.

We can't wait to meet you, sweet boy.

Love upon love,

Mom

Moving ahead.

The blog has been silent, but our lives have been moving forward. We have felt the power of prayer and the hand of our God working ever so obviously in our lives over the past couple weeks. Specific prayers have been prayed and specific prayers have been answered. We believe that God can work a miracle, heal our sweet boy, and use our situation to bring Him glory. This continues to be our prayer. 

Needless to say, we have done a lot of research on spina bifida in the last couple of weeks, and have become far more familiar with it than we ever thought possible.

In our research, we found that there is actually a surgical procedure that can be done in utero to close the wound on the lower back. Only three hospitals in the U.S. perform the procedure – one in Philadelphia, one in San Francisco, and one in Nashville. Since Vanderbilt Children's Hospital in Nashville is the closest facility to us, we have been in contact with them and have had all of my medical records faxed over for further review. 

After looking at my records, they informed me that there did not appear to be any red flags that would initially prevent me from being a candidate for this surgery. So, we have an appointment to meet the surgical team on February 27th for an extensive evaluation. As there is quite the list of requirements that must be met in order for the surgery to take place - pertaining to me, the baby, and the location of his spina bifida lesion - we are still unsure of what our future holds. 

If the evaluation proves us to be prime candidates for the surgery, we will have 6 days to make a decision. The surgery will potentially be on March 5th. It all seems a bit rushed, but only because it has to be. Their research finds that mothers and babies have the best results when the surgery is performed between the 22nd and 24th week of pregnancy. I will be 23 weeks 1 day on March 5th. 

For the curious, there are many possible benefits – the biggest being that the procedure has a high rate of success at reversing the Arnold Chiari II malformation (which basically means that the brain is being pulled into the spinal column) and reducing the chances that our son will need a shunt to remediate his hydrocephalus (that is, too much fluid in the brain). It may also reduce the amount of damage that may be done to the spinal cord, but the research on the benefits here is uncertain. It might help and it might not.

There are a lot of risks to the procedure as well. The incidence of premature birth goes way up if we choose to have the surgery – almost a 50% chance of prematurity. There are risks to me as well. If the incision in my uterus ruptures, it could be life-threatening, to both me and to the baby. I will have to be mostly in a wheelchair for the remainder of the pregnancy, and won’t be able to pick up anything heavier than a jug of milk. That will be tough with a 15-month-old daughter. The costs of the procedure are much higher than conventional treatment as well. Fortunately, our insurance will cover it, but we will still have to pay 15%.

So we will have many things to consider in the coming months. We fervently pray that the Holy Spirit will lead our every step and decisions throughout our journey, and no matter what, we continue to give Him the praise. We ask for your prayers, too! We see God moving. He's working! Let's keep moving mountains! 

A little more to update you on:

I went in for an amniocentesis yesterday (only because it is required prior to prenatal surgery.)   In the ultrasound, Little Brother was kicking and wiggling up a storm. His heart still looked perfect, his lesion was still incredibly small (and low), and he is right on track with all his typical measurements.

He has been proving himself quite the kicker in the past few days, and Justin felt him for the first time tonight. With everything we're going through, baby kicks always seem to let us forget about it, at least for a brief moment in time. 

We're lucky, blessed, and thankful for all we have been given and for this opportunity to share such a journey with our unique little boy!   

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.