Tuesday, April 30, 2013

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.

Monday, April 29, 2013






*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

Wednesday, April 24, 2013

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!


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