Wednesday, December 14, 2011

"I have traveled many moonless nights. Cold and weary with a babe inside. And I wonder what I've done."

"Holy Father, You have come.
And chosen me now to carry Your son."

It’s been so long I’m not even sure where to begin! I’m impressed with all of you who spit out blogs like it is nothing, even during the holiday season. Holiday blogginitis: the inability to put one’s life into words during the holiday, and/or the lack of energy to write. Yep, that’s me…not to mention the nausea that continues to have me running for the kitchen sink and turning my nose at foods I used to love (chocolate).

However, Charlotte is in bed, thoroughly exhausted, because Lilly woke her from her nap THREE times; and Ben has brought work home with him tonight. I’m out of excuses, so I guess I need to write.

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I believe I left off writing before Thanksgiving. I hope everyone had a wonderful time. We certainly did. We celebrated with family and had the wonderful treat of a visit with my dad for a few days. He is an amazing father but also one of my best friends, and I am always glad to have him near.

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As is Charlotte.

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From birth, our little girl has had a special affection for her Papa.

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I think she has excellent taste :)

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We were looking forward to a quieter end to November, but it seemed to disappear in a matter of moments. December has been, well, busy. There are all the typical holiday gatherings, plus doctors visits for Charlotte and for myself. Her last visit to Children’s to see Urology brought wonderful news: great looking kidneys and no in/out caths. Out urologist informed us that they do not consider Charlotte’s past UTIs as true infections. He let us know that because of her conditions she would always test positive for bacteria, but unless she has a fever don’t worry. YEAH!!! This meant that I did not allow my baby to go around with an infection. Lots of guilt was lifted off my shoulders at that visit.

Next, Charlotte had a 15month check up. All went well, though my pediatrician was surprised by her weight (18lb), saying she looked at least 20lb. Gotta love those chipmunk cheeks!!! I also had a doctor’s appointment to check on Peanut. I was able to hear the heart beat which I love, and my doctor let me know they would schedule me for a diagnostic ultrasound at UAB. This is due to the fact that I am at a higher risk to have a child with SB, although the odds are still relatively low. I won’t lie; as Christmas nears, my anxiety level about this ultrasound increases. I would take a thousand Charlottes. She is more than I could ever want or deserve. However, I still want a healthy baby, because it is so hard to watch a child suffer. I know that God is in control of this situation and there is nothing more I can do, but worry still creeps into my heart. I am praying for peace in any and all circumstances and the strength to reign in my thoughts.

Charlotte also has an appointment with her Ophthalmologist in a few weeks to see about eye surgery. I am praying for strength through this trial as well. But on a brighter note: Charlotte now has her braces! We are practicing standing everyday for at least an hour. Wow, it wears us both out. I now know that physical therapists have to be in good shape. I’m having a hard time, and my girl is tiny. It will probably still be awhile before she walks, but starting the steps towards it is quite exciting.

And for even MORE exciting news…

We headed down to Auburn this past weekend to celebrate Nadia’s, my brother's girlfriend, graduation. It was a ton of fun hanging out and gathering for the fun occasion. Sunday, after a delicious meal filled with family and friends we went outside to take pictures. I was trying to keep bundled up, when all of the sudden Will was down on one knee. Nadia, with tears in her eyes, replied with a resounding YES. She seems like family already, but we are all thrilled to see them take this wonderful step. In a way it’s hard to believe that my big brother, ever the bachelor, is tying the knot. But I’m thrilled. Marriage is so much better than dating. You get to live and travel life with your best friend. Will is not only hilarious and smart but one of the most thoughtful people I know, and I think those qualities will be cherished by Nadia in their marriage. Nadia is also smart (I’m the one in the family lacking brains) funny, genuine, so helpful, and best of all she likes my brother. I can’t wait for the big day. I’m just hoping that it is more than a day or two after June 3 :)


I hope you all are enjoying the season with friends and family. This Christmas I am often thinking of Mary and her journey. I carry my own babe and the love I have for this child is beyond words. What a wonder it must have been for her to know that in her womb was the Savior; that the babe she would nurse would change the world. And how hard it must have been to hear the words of those who did not believe her situation. How hard it must have been to travel and give birth in a strange place without the comfort of a mother or aunt to help her. Yet, she quietly and humbly obeyed. I continue to pray for Mary’s quiet heart when my mind rattles with all that surrounds me and my spirit grows weary.

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MERRY CHRISTMAS!!

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Saturday, November 19, 2011

"Nothing last forever even the cold November rain"

I worked out for the first time since I found out I was expecting. Yes, I know, that's pretty pathetic. It is just so hard to work out when you are tired and nauseous, but I've decided I have been a bum long enough. Tomorrow I'll be 12 weeks and I am determined to continue exercising through out this pregnancy, morning sickness or not!

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The other reason I haven't been exercising is because of travel. The past few weeks have been a whirlwind. We are greatly looking forward to the quieter half of November. Then December comes and brings with it a bit of chaos, but also lots of holiday cheer :)

We did have a lovely time on our extended visit to Covington. It was bliss to have my parents help with Charlotte in the morning and to be "looked after." It was nice to spend days playing with Charlotte instead of worrying about my typically long to-do list. The days were crisp and full of fall color.

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We spent a fair amount of time outdoors enjoying the leaves and chill of November.

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Charlotte enjoys being outside, and I have to admit I am not quite ready for the days when going outside means a frozen face. So, we will try to soak up the nice days while they last.

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While we were in my hometown we celebrated Meghan's baby shower. I had a blast decorating my mom's house and arranging flowers. We decided on the colors pink and orange and threw in Jellybean accents because Meghan called the baby Jellybean before she found out she was having a girl.

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I made cake pops again and even gave Charlotte a taste; she loved them!

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The house was full of women enjoying the celebration of a new life that Meghan and Tom will soon be holding.

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I had to sneak up stairs and put Charlotte to bed before Meghan opened all her presents, but I did get to see quite a few lovely things that had been specially picked out for Josey.

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I am hoping Meghan had a good time. I definitely did. It was wonderful to celebrate Josey and the joy she will bring as well as catch up with old friends.

Saturday we celebrated my niece Lia's 1st Birthday. I took tons of pictures, but I'm going to let my brother Henry use them for his own post. I will say that it was a blast. The food was awesome, and by awesome I mean when Charlotte finished the cupcake I gave her she started SCREAMING for more. Lia was the perfect party girl. She looked adorable, was happy to see all her guests, greatly enjoyed her cupcake, and was thrilled by her presents. I can't believe she is already one. I can't believe she and Charlotte no longer look like babies. I can't believe I'm expecting number 2!

After a wonderful visit in Covington, my mom and I headed to Childrens' again for Charlotte to have a CT scan. I had been nervous about the possibility of another shunt malfunction, but her ventricle sizes had come down. It was a bit scary to see change. They showed us what her brain looked like after a normal CT and the CT before surgery. The swelling was huge. They even warned us that her ventricles may never go down to the size they were. I am just continuing to pray that if she has another malfunction, the signs will be obvious.

In all other ways Charlotte seems to be thriving. She is army crawling rapidly these days, has mastered transitioning from laying to sitting, and tries to get up on her knees. She has tried to pull up to reach toys. This week she was fitted for braces, and I can't wait to see the improvements she will make with them. Once again, thank you for all the prayers and support!!

Oh, and if I don't manage a post before Thursday (which is likely) Have A WONDERFUL THANKSGIVING!!!

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Tuesday, November 8, 2011

Blessed be your name, on the road marked with suffering, though there's pain in the offering, blessed be Your name."

“I thank my God upon every remembrance of you, always in every prayer of mine making request for you all with joy, for your fellowship in the gospel from the first day until now, being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ;” (Philippians 1: 3-6)

How do I begin to thank you, my friends and family and even those of you I don’t personally know, for your prayers, kind words, and support? You cannot begin to imagine the impact they have made. I am so humbled, often thinking how undeserving I am of your kindness; yet grateful that you love our family enough that you would call upon the Father to aid us. I continue to be awed by the Body of Christ. I have been prayed for my entire life but I think I took those prayers for granted too often until Charlotte’s diagnosis. You have prayed with me as I prayed; you have prayed for our family when I had no prayers left. And I am daily thanking God for placing you all in my life. Know that your words and support were needed, were genuinely felt, were a balm to weary hearts, and will not be forgotten.

Tuesday, we got up in the wee hours of the morning to make it to the hospital by 5:30am. I had been dreading waking up Charlotte and not being able to feed her. I had a friend specifically praying for this trial. The prayers were heard and God came through in a big way. Charlotte did wonderfully. I did have a secret weapon to help ensure her happiness: my mom. She fussed a little but once I had her changed and in my mother’s arms she really didn’t fuss. We arrived at the hospital, signed in, and then had a long wait ahead of us. Charlotte was doing fine and I was doing ok running off sheer adrenaline. At around 7am we were called back to do some tests and then it was on to a preOP waiting room. Several different teams came in and checked on Charlotte, asking us questions and reviewing her chart. She napped on me some which were precious moments that I savored.

A nurse for Anesthesiology came in and told us to follow her. We walked down hospital hall ways and I thought we were headed to another room. But there in a hallway she kindly said this is as far as we could go. I had to hand Charlotte over as she clung to stay with me and turn on my daughter and walk away. It was a moment I will never forget and do not wish on anyone. I really don’t think it matters if your child is having their tonsils taken out or brain surgery, walking away is almost impossible. It goes against our instinct as mothers. We are placing them in “harms” way, for their betterment but still where pain lies ahead. And we are putting our trust in strangers, people who don’t know our children, people who cannot possibly know how wonderful or how much joy our babies have brought to our lives. It is for their betterment, so against instinct, against the nature that God placed in us to protect our young at all cost, we hand them over. It is a moment that will haunt me.

At Children’s they give you beeper devices much like those at restaurants, that light up and vibrate when there is news on you child’s surgery. We took our beeper and headed over to a waiting area with my mom and my in-laws. And we began the wait. I couldn’t small talk and I could barely contain my tears, so I put on headphones and tried to find comfort in music. But there really is no comfort in moments like those; as my husband said, you just survive. We survived till the first page which told us they were beginning to operate. We survived till Dr. Wellons came and told us the surgery had been successful. I was relived but mainly still in survival mode till they call us back to see Charlotte.

Charlotte immediately began to cry in raspy tones when she saw me and I cried as well. Cried because she looked too small for her hospital bed and she seemed so frail. Cried because she was ok and I could finally hold her. I held her and she fell in and out of sleep in my arms. We went to a room and Charlotte continued to do well the rest of the afternoon. She napped off and on, played with puzzles, and ate hardly. The doctors informed us that normally recovery is very fast and in a day or two she should be back to normal. There were tests and different nurses in and out and the night was much the same. She continued to do well though she screamed during the finger prick to draw blood, and the sight of the slow processes made me nauseous. I am thin skinned when it comes to seeing my child in pain.

The morning progressed much the same with only one incident of Charlotte throwing up on the two of us after being given disgusting Advil. But she recovered quickly. Late morning Neurology came by and gave us the go ahead to be discharged as well as how to care for the incision.

We headed home Wednesday, and have been trying to lay low ever since. I did have a Peanut check up in Huntsville which was Charlotte’s first trip out. Neurology recommend that we try to limit her exposure as much as possible to lessen the risk of infection.

Charlotte has jumped back just as they said she would.

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She is sorting, exploring and continues to be my little observer.

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Charlotte continues to be curious of Lilly, but shies away from her stinky licks 

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I’ve tried to get her in the fresh air as much as possible after being cooped up in the hospital.

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She loves being outside.

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Charlotte seems to be doing well, though I worry at any sign of fatigue or fussiness. We were all under the mistaken notion that they had caught the malfunction early, and that this was the reason she was un-symptomatic. However, this was not the case. Charlotte was at the point were most children are displaying signs like vomiting and lethargy. We go back this Monday for another CT scan and I am praying that all looks well. I am also praying that if she has another malfunction there will be obvious signs. It scares me to think that her spinal fluid could be swelling up in her brain without me having a clue. I am trying to trust in the Great Physician who has so lovingly cared for my daughter thus far. His plans “are to prosper (her) and not to harm (her).”

In the meantime I’m going to enjoy my time in Covington. Charlotte and I headed down today. I have a baby shower for a life long friend of mine, Meghan. I love baby showers…all the cute clothes, and it will be wonderful to see my friends and best of all, to celebrate this new life. I am also thrilled to be celebrating my niece Lia’s 1st Birthday. I can’t believe how quickly the time passes. It seems like not to long ago Dana and I were both soothing little babies on Thanksgiving and now these girls are entering toddlerhood. Time passes much too quickly with children.

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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 :)