Saturday, October 29, 2011

"You know I've seen a lot of what the world can do, and it's breaking my heart in two, cause I never wanna see you sad girl"

We attended SB clinic this past Wednesday in Birmingham. First, Charlotte had to get a few X-rays, and then we met with her orthopedic doctor. As I have stated before, we were very nervous about her right hip dysplasia and the possibility of surgery. She has been army crawling everywhere and even trying to stand, but her hips still pop. The doctor was pleased with her progress and then showed us how her right hip had improved vastly. It is still not perfect but there is more curve to the hip bone and the ball and socket are more closely held by muscle. My mom and I were both tearing up at the news, and Ben was thrilled as well. The doctor also decided it was time for AFOs (ankle foot orthopedics) to help Charlotte stand without collapsing forward.

We were all ready to celebrate the great “no surgery” news but still had the bigger clinic to head to. We registered downstairs, Charlotte had a CT scan, and then we began the wait. Clinic is a long day when things are running smoothly, however our neurosurgeon was in the OR for an emergency surgery, so it was a very long wait. About an hour or so into the wait, Nadine, our neurosurgeon’s nurse came out and said she wanted to see how Charlotte was doing. She is wonderful and I didn’t think anything about it. She asked me questions about how Charlotte was doing and then gave me the bad news that the CT scan showed enlarged ventricles in her brain. We were all shocked, because Charlotte has showed no signs of shunt malfunction. In fact, she has been doing excellent lately; moving around more vigorously and continuing to have an enormous appetite. Nadine warned us that we could have a long wait ahead but she would try to get us in to see Dr. Wellons as soon as possible.

I think Ben and my Mom were hoping they might wait and see how Charlotte did. I’m not typically a pessimist, but with things like this I assume the worst. I tried to hold myself together as we sat waiting and the hours slowly ticked by. We saw Dr. Wellons around 4pm and he informed us Charlotte would need surgery on Tuesday; unless she started displaying severe signs of malfunction. The shunt is three parts, and he informed us that the part that is malfunctioning 85% of the time is the piece in the brain due to tendrils wrapping around it. They will check all parts, but most likely will need to replace this. We discussed all we needed to do, signed papers, and nailed down times. Then, as an after thought, we mentioned that her urine had smelled strongly for the past few weeks.

I had called my pediatrician awhile back about it because I was a little worried; though she had no fever or fussiness. He said to call him if she developed a fever, which she never did. We all assumed it was from the massive amount of veggies she eats. However, Dr. Wellons said they would test her urine because they do not want any other infections untreated when they operate. I began to kick myself, thinking I should have had her tested long ago. Our urologist’s nurse came in to take a urine sample. She told me it looked very clear and that I hadn’t missed anything, so I relaxed a bit.

Nadine then took us to meet with anesthesia who gave us paper work. Then it was onto draw blood. That went terribly. The nurse was fast but Charlotte was out of energy and screamed the whole time. Last was an X-ray of the shunt. During all the x-rays and scans I could not be with her because I am pregnant. It was hard, but standing outside the room during that last one nearly broke me. She screamed and screamed, and I couldn’t even tell her it would be alright. Finally, all exhausted we headed back to my grandparents.

Yesterday, while I was in Wal-Mart, Nadine called to tell me that Charlotte does indeed have a UTI and would need to start antibiotics immediately. The nurse was wrong. I had missed something. I had missed something major and allowed my daughter to have a UTI for weeks. I broke down in Wal-Mart, hating myself and my carelessness. I am Charlotte’s advocate. It is my job to make sure she gets the care she needs even if it means being the pestering parent who calls the Doctor about everything. I had failed.

The UTI also means that Charlotte is most likely retaining urine and will need to start in and out catheterization. We knew this was a possibility, but now it is one more thing to face, one more health issue that needs to be resolved.

There are parents dealing with much tougher situations at clinic. My heart hurts for them and all that their own children have to endure. Yet, it doesn’t make what I am going through with my own daughter any less painful. When it is your own child there are no comparisons; they are yours and you hurt for them. And maybe people would think that those initial surgeries were harder, because she was so incredibly young and fragile. But I’m finding that to be false. It almost seems harder now because I know her more. I know her better than anyone. And she knows me and expects things from me. I can’t explain to her why, when I wake her at 4:30 am Tuesday morning, I am not feeding her. I know it will be miserable because Charlotte will be tired, confused, and hungry, wondering why she can’t be fed.

This surgery is basically inevitable with SB, but you still hope and pray that your child is the rare one who makes it to 25 before needing surgery. And for reasons unknown to me, the likelihood of failure after the new shunt is placed is very high. Most often, it takes several surgeries to get a working shunt. I am praying this is not the case for Charlotte but I am afraid none the less. Dr. Wellons has been a wonderful surgeon and he does this often. But brain surgery on my child will NEVER seem routine.

I am very grateful that Charlotte does not have to have hip surgery and I am also grateful they found this malfunction before it was causing severe signs. However, I sometimes want to tell God “enough. We have enough on our plate right now. Do something to me instead of my daughter. Are you punishing her for my mistakes, or my lack of faith? Please quit using her as my trial.” I wish I could say I’m at peace with all this. That I’m counting it all joy. Maybe joy comes later. Maybe you just have to endure for awhile and then when you think you can no longer endure God in His grace places joy in your heart. For now, I’m just praying that God would help me get through this and for the miracle that the shunt surgery would go smoothly and work wonderfully.

Tuesday, October 25, 2011

"God made me for a reason and nothin' is in vain. Redemption comes in many shapes with many kinds of pain."

"Oh sweet Jesus if you're listening, keep me ever close to you
As I'm stumblin', tumblin', wonderin', as I'm travelin' thru"

We got back Sunday from a trip to the beach with my family and it was great. We headed down to St. George Island Monday, stopping in Auburn for a night to break up the trip. The only thing that would have brightened the vacation is if my brother Will and his girlfriend Nadia could have joined us. But we had a fairly full house with my parents, my brother Henry, my sister-in-law Dana, my niece Lia, and my grandparents Grammie and PawPaw.

And if you are wondering, Peanut did continue to make me feel fairly nauseous but the distraction and help of family was a welcome break. It was kind of sad being at the beach and not being able to stomach sea food. However, I did discover that I love white toast with peanut butter.

I brought my camera, thinking I would take beautiful beach portraits and zillions of pictures of Charlotte playing in the sand. My photography skills are in serious decline because Wednesday was the only day I managed to snap any shots. It was due to the chilly weather we had, my own fatigue, and a baby who had a serious aversion to the sand. Charlotte loved the shells, the waves, the birds, but took up a strong dislike to the sand. We sat her in it, granted it was cold and windy, and she immediately started to cry.

She did enjoy strolls on the beach and observing the wonder that the ocean can display.

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We fed the seagulls and Charlotte seemed to get a kick out of watching all the birds swooped down and fight for pieces of bread. Lia however, was not a fan and I can't blame her. It was almost disconcerting how close they came.

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Henry's favorite part was running them off!

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It was so nice to bring the girls on their first beach trip while being able to enjoy the company of family.

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I am hoping this will be the first of many joint trips to the beach and that Lia's love of the sand will rub off on Charlotte.

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I would love it if my parents continue to join us as well because Charlotte is always happy in their presence.

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I think about my own grandparents and how much I enjoyed them as a child and continue to now. There is a special bond there and it is wonderful to see my own daughter develop this bond.

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There is so much love to be had and it is such a blessing knowing that peanut will be surrounded by it as well.

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It is always a joy to see my daughter interact with loved ones and I love being around my family. Those were definitely highlights of the trip. Yet, my favorite moment might have been playing in the ocean with my brother. When Henry and I go to the beach we forget that we are grown ups and revert back to our 10 year old selves. We belly surfed on big waves. We sputtered as gallons of salt water went up our noises. We found sand dollars and let them tickle our hands as they tried to escape. We hummed the soundtrack to Chariots of Fire as we tried to run through waist deep water. We froze when we finally got out and laughed as we tried to get under the warm spray from the hose to rinse sand from our feet. We had a blast and though I have no pictures of our craziness it will be a cherished memory.

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The beach was wonderful and family was a huge help when I was feeling nauseous and tired. I look forward to the next trip when our family picture will contain four instead of three faces.

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We head to Birmingham tonight because Charlotte's SB clinic is Wednesday. Thursday she meets with the ophthalmologist to discuss possible eye surgery. I am trying not to be anxious, knowing that it does no good. But it is tough. The possibility of eye surgery and the more major hip surgery looms in our future. I know that God is sovereign over all things and there would never be a time when I would want my daughter to undergo surgery. Yet, she still seems so young; too young to understand it is necessary; too young to understand it is needed for her health. I would ask that you pray for wisdom from her doctors and courage and peace for me; that I would be able to say "it is well" no matter the outcome.

I'll leave you on a happy note.

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Charlotte's first tiny French braid :)

Friday, October 14, 2011

"But it takes two when it use to take one, it takes two when it use to take only one."

This picture for me is worth a thousand words.

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That's right! Charlotte is going to be a big sister, a little big sister :) The Brattons will now be a family of FOUR!!! We are so excited. I will be 7 weeks Sunday making my due date June 3, 2012.

I'm overjoyed, nervous, excited, anxious, giddy, blessed and NAUSEOUS!!!

In fact I'm not feeling so hot at the moment so I will try to write more soon.

In the meantime we covet your prayers for this new little miracle. I cannot wait to see what God has in store for Peanut!!!

Sunday, October 9, 2011

"I've got sunshine on a cloudy day. When it's cold outside I've got the month of May."

Ok, so my blogging attempt have been slim lately!! I'm going to keep the writing down to a minimum and let pictures speak for themselves.

I wrote last time about Charlotte being a bit of a mess and my own prayers for peace and patience. God has been answering in a big way. She is sleeping better at night which makes ALL the difference in the world. She still whines, but I'm trying not to let it get to me, after all she is still young and has no language with which to use. Thanks to all the kind comments on this subject, they were all extremely helpful. Those are all major praises, but the one I am most grateful for is God changing my perspective. He has been allowing me to see the glass half full and to see how blessed I truly am. Instead of getting angry that Charlotte refuses to nap, I've been lying down with her in the afternoon, which is a much needed respite for both of us. Instead of being frustrated by things I want to get done, I've tried to incorporate Charlotte into my daily tasks. Now as I fold laundry, we play a game of swinging the dryer door back and forth to each other. And as I make the bed I play a hide and seek game, crawling around and popping up on one side of the bed to surprise her. She laughs so hard every time. As I write my blog I let her sit on my lap and pull my hair :) Perspective can make all the difference and God has been working on mine. He is showing me the joy in everyday task and to savor the moments because they pass all too quickly.

A few pictures of Charlotte at play:

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New hair style:

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And the maxi skirt I made:

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Loooong overdue pictures of the SB Walk-N-Roll.

Team Charlotte:
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Next year we are getting fun t-shirts made.

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Mom and Will had a great time boogieing with Charlotte before the walk began.

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Lions, and tigers, and bears OH MY!

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The walkers:

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Charlotte enjoyed pulling off her name tag as well as showing her wild side.

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I am so grateful to my family and friends for joining the walk and making donations. Your support has been a constant rock for me.

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That you love and support me is great. That you pray for and support my daughter is the best kind of love.

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