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

Two years ago.

Today hasn't been special.

At least to anyone looking from the outside in.

Today has been one of the mundane, get the housework done, donate a few things here, throw away a few things there.

Lunch from leftovers.

Naps for the kids.

A little whining. A little laughing. A whole lot of contentment. 

Like I said, nothing special.

Except today. Today is life changing for us.

Two years ago, which is hard for me to truly believe, was a fundamentally life changing day for, with prayers and thankfulness, our now family of four.

You see, two years ago, we found out first hand how incredibly fragile life is. We found out that even when you take every precaution in the world, do all of the research, and pray for healthy, some things are just out of our hands.

Two years ago, we were told we were having a son - and he would not live.

There are no flowery words to describe it. No dressing it up or wrapping it in pretty packaging.

It was excruciating. It was terrifying. It was all consuming to the point that breathing literally hurt. 

In midst of the storm, it was ugly. 

But how beautiful the aftermath is. 

Today, there have been things that weren't there on this day two years ago.

There have been laughs!

There has been joy.

There has been sibling love and playfulness.

Today, we are thankful that hugs can help our tears and that kisses can cure our hurt. 

This day two years ago changed our perspective. Our perspective on many things, but mainly our perspective on joy.  

Although the memories are still vivid and the pain can still be felt - we find beauty in them because we know how much joy we could have missed. 

Tonight, in honor of Elam, we celebrated with our favorite local pizza and a scoop of ice cream from the fudge shop downtown. As the sun was setting and Elam was pointing out every bird that flew near, I felt peace. 

Peace, perfect, whole. 

This is where I'm supposed be. This is what I'm supposed to be doing. 

This.

 Elam's mom. Ellery's mom. Justin's wife. 

Oh the joy that we would have missed. 

We are thankful for the hard days because it is only through them that we find unmistakable joy 

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!

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.

Blue Nail Polish

"Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think."

Ephesians 3:20

Y'all!

Look at all these blue fingernails! 

I'm not sure it is possible for you to completely understand how much of an impact you guys are having on the life of our little family. To be able to see your love for us and for our little guy - who we have yet to meet, is truly unbelievable!

Pictures have cotinuously been sent to me over the past two days. Some from family, some from friends, and others from people we don't even know!

To say I was not expecting this, is an understatement! 

From Iowa to South Carolina, including many states in between, we have seen an outpouring of love from people who stand in the gap for us when we are feeling low. 

You are warriors. 

You are encouragers.

You are blessings. 

And we are so thankful - for every one of you! 

Yesterday we went to New Orleans for our 38 week check up. The doctor determined that my body was not quite ready to schedule an induction for next week, so we have pushed it back to my original due date, July 1. (Of course, with the unpredictable nature of babies, that date is still rather tenative.)

We are so ready to meet our little guy, that we can hardly stand it. We are ready to share with the world the blessing we have already recieved.

Weakness.

As I sit here, staring at a blank page, the words in my head plead with my fingers to type the very thoughts I am feeling. My fingers are hesitant to release them - more directly - maybe its me who's hesitant to admit their very existence.

Today my heart is heavy.

Tears fall from my eyes as I long for the ability to be as naive as I was not so long ago. Naive in the sense that pregnancy was something that was certain. My ideology of conception was based on a woman's desire to have a baby, which was fulfilled as quickly as she wished it. Nine months later there would be a precious, healthy, newborn bundle, wrapped in pink or blue ready for her to take home and love. It was that simple and that easy.

My nature didn't think of things such as miscarriage, chromosomal abnormalities, or neural tube defects. Healthy, child-bearing women of my age did not have these problems - or so my innocence would allow me to believe.

And then, suddenly and without warning, I enter the realm of 'you can't control it', and reality smacks me in the face.

I have a dear friend, who just found out today that she is in the process of miscarrying for the third time. She is my age. Healthy, child-bearing age.

I have another friend who has tried for years, exhausted all fertility options, and is still childless.

I, as you all are aware, am bearing my own burden of uncertainty (though we know that he will also be very much a blessing).

Take your prenatal vitamins - religiously - before you even think about getting pregnant. Don't take hot baths or eat deli meat. Avoid caffeine and cleaning supplies. Drink lots of water and don't forget to go for a nice walk. By doing all this, you and your baby will be just fine. At least this is what we are led to believe.

And how I wish it was as simple of a thing that could be condensed into a little "do and do not" list that would guarantee success.  But unfortunately, the real truth is, as hard as we try, we can't control it.

Before Little Brother, spina bifida was just something I learned about in my sophomore Introduction to Special Education course. It was something that, if the mother wasn't negligent and actually took her prenatal, didn't happen.

I have been taking a prenatal vitamin since before I was pregnant with Ellery. I haven't had but a drop of caffeine (admittedly, besides what is found in chocolate) in more than two years. I am a do-it-all-by-the-books type of pregnant woman. So, today, in the midst of sharing my friend's deep sorrow and continuing to acknowledge the intensity of my own journey, it is a hard concept for me to grasp, in the center of it all, that our God can be so, head-over-heels in love with us, and still let scary and sad things happen.

My faith is not wavering. I am still very much convinced that His plan is much bigger and better than my own. However, on occasion my humanity takes over, and I step back, look around and wonder that ever-present question: Why?

Why do these sorts of things happen to women who do everything right? What about the healthy babies born to those who do everything wrong? How does this happen?

And when my human heart starts to stray and think thoughts such as these, I hear a still, small whisper that says, 'because it is My will.'

God's will. His.Perfect.Will.

And that's where I rest. Where I need to rest, even when it seems impossible - like tonight. Without specific reasons, without direct answers. Just the reminder to be thankful for what we can not change, for in tough times we are reminded of our weakness.  And in our weakness, we are reminded of His strength.

May He hold me. You. Us.  

This is my prayer.

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. 

A Visit to Vanderbilt

Things don't go wrong and break your heart so you can become bitter.They happen to break you down and build you up so you can be all that you were intended to be. 

- Charles Jones

Last Wednesday was THE day. The day all of you were so graciously praying and thinking about, anticipating the results right along with us.

We arrived at Vanderbilt Children's Hospital at 7:30 AM and were promptly escorted to the ultrasound room before we could fill out the first page of the stack of papers we had been handed. And with that, the whirlwind began.

The ultrasound lasted a little over an hour. Pictures upon pictures were taken. Every angle of our sweet boy was explored with a fine-toothed comb. The clarity of the machines were amazing, reassuring us that whatever they found would be accompanied with the most accuracy possible.

The ultrasound was finished and we were instructed to sit in an exam room across the hall while they edited pictures and reviewed the results. A sweet nurse came in and offered us snacks and drinks while we waited.

The Maternal-Fetal Medicine (MFM) OB came in shortly with a warm, inviting disposition, as if we were the only patients she was seeing all day. She talked all about Spina Bifida. She talked about ventricle sizes. She talked about shunts. Not much of this information was new to us.

Then came the curve ball, the one that really rocked our world.

She pulled out a piece of paper she had photocopied for us. It was a diagram of the spine, labeled with numbered vertebrae and functions for each level. We had seen this same diagram a dozen times before - online and from our specialist in Jackson. What was new to us were the codes handwritten in the bottom corner of the page: L2-L3.

Justin squeezed my hand around the same time my eyes started filling with tears.

I tried to think positively. I tried to hope that those numbers were not directed at us and our individual case. But that didn't change what came next. The Dr. continued, "We see that, with your son, his lesion falls somewhere around the L2-L3 vertebrae. As you can see on the diagram, although each individual case is different, lesions in this location usually affect a baby's ability to have strength and function in the hips and everything below."

I was not prepared for this information.

We had been walking around for a month thinking his lesion was low - very low - somewhere around the S1 vertebrae. But now, the super-duper state of the art machines that I mentioned earlier have just identified it to be around 5 vertebrae higher on the spine. This is the difference between being able to walk unassisted and always being confined to a wheelchair. I was terrified.

As I clung desperately to the last strand of my emotional sanity for the day, the OB threw us more unexpected information.

They were concerned about his heart. 

The doctor said it all appeared to be fine, with normal blood flow patterns and valves, but the way it was positioned in his chest was cause for concern. So, we were quickly escorted down to the 5th Floor to have a Fetal Echo Cardiogram.

We waited, and I cried. I pleaded with God as I prayed. I cried harder as I felt the beginnings of anger welling up inside of me. I told God that nothing was supposed to be wrong with his heart! God probably laughed.

We didn't wait terribly long, but it was long enough for my cries to turn in to sobs and for my head to begin pounding with a force greater than any I have experienced. I laid back on an ultrasound table for the second time that day and closed my eyes. The scan was finished in around 30 minutes, and we waited again to hear the results. The heart doctor came in, introduced herself and decided she wanted to take a few looks for herself. After another 10 minute exam, she put down the wand and told us a whole bunch of information, but the gist of it: everything looked fine!

Through tears, I let out a big sigh, as we remembered to be thankful for the blessings we are given.

We then met with the surgeon who has preformed all of the in utero surgeries at Vanderbilt since they started. We met with the neonatologist/ pediatrician. The genetic counselor. A social worker. The billing department. And the MFM OB again.

Somewhere in there, I threw up - maybe three times. I cried a whole lot. And was in major shock for most of our visit.

We gathered a lot of information, and asked a whole lot of questions. We wanted to know - needed to know -  Is this surgery the right thing to do for our situation?

And at the end of the day, after an hour spent in a very hot MRI machine, we left the hospital at 6:30 PM, more conflicted then when we started.

We were emotionally and physically exhausted. We went back to the hotel room and eventually ordered room service. We tried to digest and decipher all of the information of the day, but we couldn't. 'If it has even the smallest chance of helping....', was the main sentence.

The next morning, since we still had a few more questions, we stopped by the hospital one last time to talk a little more about the benefits of the surgery. We had heard the risks. And we had heard of how some babies benefit from the surgery, but what I wanted to know, how will my baby benefit from the surgery?

And so we asked - and here's what we found out:

Little brother's hydrocephalus is beyond the point where the doctors think the surgery would give much of a chance at alleviating the need for a shunt immediately after birth - and reducing the need for a shunt may be the biggest reason to have the surgery.

His lesion is long, and flat, and higher than most who see much benefit from the surgery. Lesions like this are more complicated to close. Some children with this type of lesion require skin grafts after birth to completely close the wound. Since the surgery isn't any simpler in utero, lesions of this type have a greater risk of opening back up in the womb, requiring surgery after birth to re-close it.

The surgery would be more complicated on me since I have an anterior placenta. The surgeons would have to take my uterus completely out of my body and turn it over, hoping my ligaments are stretchy enough for them to operate on the backside of my uterus.

Bottom line - there are a lot of risks to the procedure and, at least in our case, no clear benefits. We have conflicted feelings right now. We are still coming to terms with the news that Little Brother's spina bifida is more severe than we originally thought, yet we still give thanks that the original progosis - that he would not live - is incorrect. We wish the surgery could offer a reasonable possibility of helping our son, but I am glad that I will be able to dance with Ellery tomorrow instead of lying on an operating table.

Please continue to pray for Little Brother's health and for God to strengthen our family. And we thank you all so much for the prayers that you have already offered as well as your words of encouragement during our time of need.

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!