My dear, sweet, very much opinionated toddler has decided she doesn't like falling asleep in her bed. She'd rather fight and fight and fight until she just can't take it anymore.

And you never know where her nap will take place. 

Wal-Mart?

Kitchen counter while coloring?

 

Oh goodness! 

Letter to Little {Brother}.

Dear Little Brother,

How fast has this time flown? My belly expands and makes room for your glorious, growing little body, and I can't believe we are just a few short weeks from meeting.  Love waits for you here. It longs to hold you and to wrap you ever so tightly in the sweetness of family.

You have Ellery to cover you in slobbery kisses.
Your sweet daddy will sing his soft lullabies in your tiny, little ears.
And I, darling boy, will strive everyday to give you more love than you know what to do with.

I long to hold you in my arms and show you all the beauty this big world has to offer. For I love you beyond words and can't wait for your precious arrival to make our family all the more complete.

Love upon love,

Mama.

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.

*Pictures from last night's finger painting session. 

Dear Ellery,

You're growing up, sweet girl. I know I've said it a thousand times, but the wonder of it never ceases to amaze me.

As I watch you wander around the yard, picking and smelling flowers, then excitedly repeating 'flow-flow', your version of flower, while running to bring them for me to see, my heart is overwhelmed with the idea that God would love us so much to give us such a blessing.

You have your moments, and you throw your fits, but you truly bring an indescribable amount of joy to our little family and keep giant smiles on our faces.

Watching you grow is oh, so much fun!

Love upon love,

Mama

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!

Big Sister Tendencies.

I think Ellery is going to love being a big sister!

Happy Easter!

For us, Easter was spent a little differently this year. 

And I was a little emotional about it, which could possible be related entirely to pregnancy hormones, but Justin says I can't use that excuse every time. So, we'll just say I was emotional. 

This was the first Easter we have spent away from our families, and I am a traditional-type person. I generally prefer to stick to things I am familiar with - such as, family on holidays. It's just something I like. 

Fortunately, we have gotten to know some pretty great people here in Mississippi, who have a way of making us feel more like family than friends. We were invited to spend our afternoon celebrating with a sweet friend and her family, and had quite the non-traditional blast!

From an egg hunt to a crawfish boil, it was a lot of fun. Even though the weather turned nasty, the power went out, and the crawfish pot blew over with a big gust of wind, we enjoyed being in the company of friends!

  

(We also found out, on our way home, that Justin's younger brother and his wife are expecting their first baby! Oh, so exciting!!)

Happy Easter!

It matters.

Yesterday Justin reminded me that I had a blog. He also mentioned that I should probably update it more often.

Oops.

And with that casual conversation, I found myself in some sort of deep reflection in regards to the words I write on this personal-anything goes- space. I have pushed the blog to the back burner not actually realizing why, until Justin brought it up.

I think I'm scared. 

I think I am afraid to write the words that are truly in my heart, because subconsciously, I am fearful of other's judgement. I am afraid that it's not okay to be so okay with everything. And then, on the other hand, I am terrified that if I find myself in a slump, and fail to be as positive as I'm trying, then I'll let everyone down.

Then the husband, who always has a good way of snapping me back into reality, quotes a good ol' kid favorite: Dr. Seuss!

“Be who you are and say what you feel because those who mind don't matter and those who matter don't mind.”

And with that, it all kind of fell back into perspective.

This is our journey through something that is difficult - something we would  have never dreamed of experiencing. This is our daily life and my special place to write my thoughts, and feelings, and to hold all of these sweet, sweet memories that I never want to forget. 

And this journey - the right now of this journey - I don't want to forget this. The good, the bad, and the every other week ultrasounds that seem to reveal something new that could potentially go wrong. I don't want to forget it.

For this is how the Lord is working through me. 

I look back and read posts from Ellery's pregnancy. I read pages of hopes and dreams and sweet love that I poured everything into. I want that for Little Brother, too. I want him to know that he is loved, oh so loved, despite any struggle he might face, we have loved him from the beginning.

So, I am going to try to start not just updating on what's going on medically with us, but also, what's going on internally, within my very much jumbled head and quite emotional heart. I want to have a reminder - for I believe reminders allow us to look back and see how God was working, even when we might not feel it.

We have a peace that has surrounded us for quite a while now - and I know that is only because of the power of prayer.  Naturally, I am not a rational person. I am not a peaceful person, especially when it comes to stressful situations. I worry. I over-analyze. I throw pity-parties.

Although I have been in a constant state of research since our diagnosis, I am not worried. I am not over-analyzing it. I am not sitting behind this computer screen throwing a pity-party. For I know, 'in all things, God works for the good of those who love him (!)' [Romans 8:28]

And we love the Lord, and know good things are coming. Good things are happening. Little Brother may have multiple surgeries and a few set backs - but the Lord is good, even in our struggles!

Please pray with us for continued peace. Pray for the will of God to be openly accepted in our lives and for us to use it to shine His glory all around us. I pray that when good things happen that we not forget that He has brought us through difficulty so that we may use it to glorify Him.


(We do have a new, exciting to us, but to you it might not make much difference, medical-related update, but I will write it out in the next post!)

A Post for Ellery.

She's picking flowers.

She's getting dirt under her fingernails.

She's loving the outdoors. 

What more could you ask for in a toddler? 

We're so in love with her, it's incredible. 

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