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.