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.


Anonymous said...

My goddaughter has hydrocephalus and has a shunt. When she was a baby they said she would probably never walk. She's three now and walks on her own with the help of leg braces. Keep your head up! Keep faith.

Susan B. said...

Hey Ess! You're the best! God could not have placed Baby Charlotte in better hands! I think you're way too hard on yourself. You seem to require perfection from yourself but you're forgetting one thing...None of us are perfect! Allow yourself some wiggle room and you'll become more relaxed, and better able to think things through.

Sweet Baby Charlotte...God has everything under control. He loves Charlotte more than any human ever could, even her own mother! SB happens because we live in a fallen world. It wasn't like this in the Garden of Eden. When bad things happen to me I recall the Scripture that says "all things work together for good to them that love the LORD." Rom 8:28. It's difficult at the time and hard to see good things come out of this, but keep the faith. God is giving you pieces of the puzzle one day at a time. And one day you'll look back on your life and say "What a beautiful plan that was. Thank you, Jesus! You really do love my family--- You really did cause all things to work together for good!"

You're awesome parents with a wonderful future! I love you dearly and pray for you all the time! Hang in there and post often! I love to hear from you!

Aunt Choo Choo

Anonymous said...

I am a first time mother going through trials as well. Your constant faith keeps me focused! Sometimes I find myself thinking God why do keep doing this tome, but I. The end I know that I'm learning a very important lesson from the ultimate teacher. Keep your heart and mind focused. Praying for you all daily!

Kristen said...

I'm praying for you, Esther. I can't imagine how hard this must be for you, but I know that the Lord will see your family through it. Charlotte's little life has pointed so many people to Him!

Vicky P. said...

Oh Esther, you did not fail Charlotte. You did what you were supposed to do in mentioning the strong odor to her doctor and he told you what he wanted you to do. You did everything you were supposed to do. I can understand that desire to be a perfect mother though. I wanted to be one and I couldn't but it wasn't for lack of trying. Thank God for His grace--none of us parents could do without it. And we can thank Him that He is the perfect Father to us and our kids--He knows just what to do and He gently leads us imperfect parents, compensates for our weaknesses, (and doesn't berate us when we come up short). I will be praying for you, Ben and your precious Charlotte that everything will go well. Love you!

Mimi said...

My dear sweet Esther, there just aren't words to express how we all are feeling right now. It just doesn't seem fair but who are we to question God. He doesn't hand us more than we can bare and Mothers are at the top of the list in heartbreaks over our children. You with Ben[and you Mom]by your side can get through this. Don't give up sweetheart. Love you.

Meghan said...

Oh Esther! It breaks my heart to read this. You are not a failure! You didn't fail your baby girl! You do everything you can, and sometimes, these things JUST HAPPEN. And you DID call the doctor. It's not your fault they told you it was okay.

You are not only going through a very, very trying time with everything for Charlotte, but you're pregnant. Which means hormones up the wazoo. Plus you're sick from the pregnancy. All of this is going to add up to you reacting extra strongly, and you are blaming yourself for things far outside of your control.

I don't believe God is using Charlotte to punish or test you. I think that He has a specific plan for her, and you are a part of it. She could not get through this and be who He wants her to be without you as her wonderful mother. He hand picked you to raise her because you were the BEST choice for her. It's not to punish you. It's to help her become exactly who He made her to be. I really believe that.

I know that none of that changes how hard this is. I know that it can feel like empty words in the face of all the heartache and frustration and anger you feel. Regardless, I hope you know how loved you are. And Ben and Charlotte and Peanut too. Prayed for without ceasing. And loved forever and a day. xoxo

John/Becca Trosset said...


My fiancee Becca loves to read your blog and see all the photos of Charlotte and your family (you truly know how to capture the best moments for your family!), she thinks you have the best ideas and style and swears when we have children that she is going to make all the clothes for them like you do for your little girl! She told me about how she was almost in tears reading your new post today and we just want to wish you and your family all the blessings in the world for Charlotte's surgery Tuesday. Keep staying positive as you have always been and a great inspiration for others.

John Trosset and Becca (soon-to-be Trosset)

Anonymous said...

so many of us have serious problems with children and close family members. We never know what is going to happen to test our strength and commitment. I do not feel sorry for you because everyone has a story to tell and life goes on no matter what is thrown our way. Whether we are making clothes or sacrificing our enjoyment of life, it is what it is. I can pour out my heart about what I have experienced, but at the end of the day...we survive. If you are seeking sympathy from your blog, it looks like you achieved your goal from naive people who ha e neberexperienced tragedy and hardship..aka Becca

Ben said...

It sounds like you've been through some tough times, possibly without much support from friends/family. If that's the case, I'm sorry you've had to endure that. I know Esther's heart. She is not seeking pity. We have a wonderful life and strive for a healthy marriage. For Esther, the blog has been a form of expression and record. Through some situatios when we don't have time to call the people we love, it's been a great tool for communication. Our friends and family aren't naive. We care and pray for them; they care and pray for us. Be nice.