Monday, September 26, 2011

Eight Months of Wonder

I've been an absurdly bad blogger of late. I've actually been quite terrible for the last eight months, but I have the most fabulous reason in the world. She is 19 lbs of pure light and wonder. My sweet Ella Harper is eight months old today, and I absolutely can not believe it. It's just...cra-cra (That's kind of ghetto for crazy...sorry...). Despite things not going exactly as planned since just before Ella arrived, the last eight months have been the most spectacular months of my life. Really, since last June has been spectacular. I've been pregnant,  had a baby, learned to be a mommy, came back from having my head cut open twice and worked full-time in between all of that. All in all, I would say 2011 has been quite the eventful year. I can't say that I haven't learned a lot, and I know that I'm more appreciative of my life now than I have ever been.

Now, since I haven't posted in a month (and even then it was a month behind), here's the nutshell of our last couple months:

I went back to work, and my hair is growing back pretty quickly. It's only long enough to barely hold between my fingers, and it isn't growing back where my incision is, but it's growing, and that's enough for this girl. I'm actually going to get my hair cut for the first time since April this week - once I found out what was going to happen, I refused to cut it so that I would have plenty to cover everything up. But the time has come - hopefully I won't freak the girl out.

Ella talks all the time. Correction - she says "da-da" all the time, and she says it to Kyle. Someone else will be holding her, and he will walk into the room, and she yells, "Da-da!" It's incredibly sweet and nauseating all at the same time. I absolutely love it, but being the jealous one that I am, I'm anxious for her to yell "ma-ma" at me. She has said it quite a few times, but not with the same recognition that she has when she talks to Kyle. She also got her first pair of Keds:) Now, child has a lot of shoes, but Keds are kind of like a rite of passage. Plus, it's the first pair she hasn't been able to rip off as soon as they are on. Golden.

We are going to the beach next week, FINALLY! I've literally been thinking of the first time I would get to take my baby to the beach for years...YEARS. And this summer didn't go quite as planned, so things were postponed a little. But none of that matters now, because we are leaving next Wednesday! We are headed to Granna and Pop's condo in Amelia Island, and it takes everything in me to not pack the car now. Last summer, Kyle and I were in Hawaii for what we knew was our last baby-free vacation for a while - what a difference a year makes, and it's the most fabulous difference in the world:)

And finally, my most fabulous friend Amanda C. B. is having a baby:) I'm beside myself with excitement, and I actually get to see her and her growing belly while we are at the beach (lucky girl and her hubby live in Atlantic Beach). I actually have a lot of friends that are having babies, and I couldn't be more excited to shower them all with gifts. I'm so excited that Ella Harper will have new friends to play with, and I will have more mommy friends to share with.

Playing rough with Daddy

Stylin' in my Seven jeans:)

Aunt Britt had her 25th birthday!

Trying to figure out how to take my Keds off:)

Mommy made me take pictures because I turned 6 months old. I'm a pro at it now:)

Tuesday, August 23, 2011

Can I get some steak with my carrots?

When Ella turned 6 months old, we got to celebrate a new milestone - solid food:) After speaking with her doctor and reading about all the benefits of waiting until 6 months, we decided to do so, and it's been hard for her daddy. He has been dying to feed her real food, and he had so much fun planning her menus and picking out foods for her to try.

We started with rice cereal, which she hated. We tried oatmeal cereal, and it was pretty successful right off the bat. Now, she LOVES it. Then, we moved on to carrots, and it took a few tries, but now she likes them pretty well. We've also been successful with sweet potatoes, green peas and bananas. Her favorite...squash. My girl LOVES her squash. I can't wipe her mouth because she can't keep her tongue in her mouth - she is constantly trying to get the spoon or the towel.

So far, the only thing she doesn't like is green beans, which is interesting because I ate a ton of green beans while I was pregnant. Maybe that's why...

She also has her first tooth coming in. It should make chewing on things interesting:)

Did I mention that I have a beautiful baby girl? 

Happy Half-Birthday, Ella!

It was nearly a month ago (I've been very bad about blogging, I realize), but we celebrated Ella's half-birthday. She turned 6 months old on July 26, and we had a LOT to celebrate, so I wanted to do something fun.

It was about two weeks after my second surgery, so I wasn't 100%, but I felt like I had already missed so much, I didn't want to miss another opportunity to celebrate my beautiful baby girl. I made her a sign, and my sister and brother-in-law decorated in the dining room. And then we were just missing party guests, and although it was last minute, all of her "friends" were able to make it. Big Bird and Elmer even donned party hats for the special occasion. Ella was less than enthused. But she did take to the party horns and hats quickly. She enjoyed chewing on them, so we had to keep an eye on her whenever she got hold of one.

I think the party girl had a good time:) We didn't party for too long, and then I had to rest for a good bit afterward. It was the most I had done since before my first surgery, so it took a little out of me. But it was worth it. Here are some pictures from her "party!"

Saturday, July 30, 2011

A lesson in humility...and a small update

First, I want to thank everyone for all of the amazing comments, get well cards and support you've given us. I'm truly grateful and humbled by it all. Thank you so much:)

Kyle and I went Friday to get my stitches out. Fi-na-lly. I wasn't quite sure what it meant, but I did know that it meant I wouldn't accidentally scrape them on the couch or touch them anymore. They ended up being long stitches because they had to go in, out, in since my skin was so weak from the first surgery. I didnt learn much, other than I still can't drive and I still can't really do much with Ella... 10 lb weight limit and all:( I thought all along that the weight limit was because the stitches you could see would pop. Nah. It's because they don't want to hurt the stitches that are holding the patch they sewed into my brain together. Well that's a horse of a different color. Why didn't you say that in the first place? For real. I would have taken them a little more seriously if I had known that. Anyways, here's a picture of my head with no stitches. Still have dirty hair, shaved hair and scrunchy pigtails, but it's an improvement. I go back to my neurosurgeon on Aug. 17 to talk about next steps and the chance for future infections.

Now, on to the bigger topic of this post. Kyle and our moms have been having to clean my stitches everyday for me. Bless their hearts. I've never had stitches before, and let me tell you what, they got gross. Scabby. My skin was growing over them. Luckily I couldn't get a good look at them, but I was smart enough to know it wasn't pretty.

And let me tell you something else, if it wasn't for Kyle, my mom and his mom, I don't know where I would be. They are the reason I got through this. The sisters pitched in, and the dads have been amazing too - taking care of the baby, stocking the fridge and just being supportive. I'm even expecting some yummies from our family's neighbor extraordinaire and extended family member Yvonne. But there are some things a girl would rather do with her mom. Between the stitches and the help I've needed with taking baths, brushing my teeth, managing my hair, discussions about diet and digestion, and basically all the tears I've cried from pure frustration, I am closer with my husband, my mom, my mother-in-law and my sisters than probably most people. Think about it...when was the last time your mom saw you completely naked? And I'm not talking undies. I mean completely naked. Me? Last week. I'm 28 years old, a wife and a mother, and my mother had to hold me up and bathe me for several days. That's love, people. And now that I'm a mommy, I totally get it. I would leap in front of a train for Ella. Giving her a bath is nothing.

This entire process (and I had to go through it twice) has been a lesson for me in faith and humility. Sometimes you just have to believe that things will get better, and sometimes you have to accept help, whether you want it or not. That's been hard for me, but I didn't have a choice. And they genuinely wanted to take care of me. I will never been able to repay them for what they have done for me, but as a mommy, I know there is no where else they would've rather been.

My parting words to you (for today): hug your moms, dads, babies, spouses, siblings and everyone who takes care of you. It's easy to do and something we take for granted. We can't always be all that we want to be when we want to be it, but if we are fortunate, there will be people there to help us get there. I'm almost there.

- Posted using BlogPress from my iPhone

Wednesday, July 20, 2011

Part Two - Brain Surgery Extravaganza:)

So onward and upward, or at least I thought. I got home on Saturday, and my first doctor's appointment was on Friday. I had good days and bad days. There were a few days when I was able to get up and walk down the hall. I still couldn't really lift my head. And I still needed help feeding myself on some days.

My mom helped me take a bath and brush my teeth every day. Kyle, my sister and his mom made sure I had everything else I needed. Brittney even gave me a squeaky ball to summon them when I needed them - worked like a charm:)

The best part about being stuck in bed was having someone to take naps with...

Kyle also refused to sleep in the bed with me because he was afraid he would throw himself about and hit me, so he put an air mattress in the floor next to my bed (he is still there now). Ella enjoyed the air mattress too.

Kyle checked my incision every day and cleaned it every night, and each night, it looked good. Until Thursday. Thursday was the worst day I had. I didn't get out of bed all day. I couldn't eat or talk. I was in immense pain and I had a pounding headache. On Thursday night, my incision started looking more red and it started to ooze. He and his mom looked at it and decided to call the doctor, who said that as long as it wasn't clear or bloody, then it was okay. He also said that since I had an appointment the next day, we could look at it then. My mom had gone home for the day, so Kyle called her and told her to come back.

Kyle took the baby to daycare, then I rode laying down in the backseat to the doctor, and Kyle and his mom practically had to carry me in. By the time we got to the doctor, my mom was already at my house, and said she would wait there until we told her what to do. At the office, I knew I needed to lay down or I would pass out. So Kyle's mom went and told the nurse that I needed to be taken back as soon as possible. So they came and got me and laid me on the table. The minute they started cutting into my stitches, infection started pouring out. The nurse said she didn't like the color, so she went and got a neurosurgeon resident (my neurosurgeon was out of town...of course), and he said that I immediately had to go to the hospital. He said that, from where he stood, there were three options: start on antibiotics and see what happens; do a spinal tap to see if the infection had penetrated my spinal fluid; or operate again and clean the infection out.

By the time I was admitted into the hospital, it had already been decided that they were going to operate again. So they rushed me back and started collecting my information. By the time my gown was on, my mom was there. Kyle and his mom had to leave to go get the baby at school, so mom stayed with me while they got my information and started getting my IVs in, taking bloodwork, trying to write down when I ate last and when I took my last meds. And then that was it. They wheeled me away. Same story as last time. Only this time, they weren't as generous with the hair shaving.

When I woke up, I was rolling down the hallway and I ran into my mom and Kyle. They put me into a regular room this time and my family filled the room. My mom and dad, Kyle, Brittney and Nick - everyone came pouring in. The pain this time was actually worse than the first time, so they kept me doped up on nausea medicine, morphine and percocet. They rotated valium in every once in a while. Again, I couldn't eat for a couple days, but this trip was complicated by the infection. After I woke up, a group of people from Infectious Diseases were in my room talking about how they were trying to isolate the bug that had caused my infection. They said that it was hospital-borne, meaning I had got it in the operating room. They said that it was superficial, and that it had not reached the dura graft on my brain, but it had gotten as close as possible. They said that once they determined the bug, they would be able to zone in on the antibiotics, but for now, I was getting a range of them. The doctor with Infectious Diseases then started talking to me. I asked her if they were going to be able to ge rid of the infection. She said yes, and then started asking me about my daughter - she asked me if my doctor and I had discussed her before deciding to have the surgery, why we decided to have it so soon and if my doctor and I had discussed waiting until my daughter was older before I had the surgery. So, my natural reaction in my doped up state was to ask her, "Am I going to die?" It was the first time, EVER, that I had ever let my fear show to anyone. And of course, my family was in the room and heard me. But when she started asking those kind of questions, I thought she was trying to tell me that I wasn't going to see my daughter grow up. She assured me I wasn't going to die - she said that she was just trying to bond with me because she had a baby too. Not smart, lady. Not smart.

After that, Kyle and my mom took turns staying the night with me, and it took about two days before I could eat or drink anything. Then, an amazing thing happened. Infectious Diseases identified the bacteria that had caused the infection, and they started me on antibiotics that targeted it. When I woke up the next morning, I sat up and ate chocolate pudding. No lie. It took two more days before I could get up and walk, use the restroom and work with physical therapy, but the turnaround was remarkable. I went in on Thursday and came home on Tuesday. And the difference between the last time and this time is incredible. Last time, I never got out of bed. Now, I spend part of the day in bed and part of the day sitting up (blogging!). My appetite has also returned. And I've been able to cut down on my meds. Instead of 2 percocet, I take one. And last night, my mom and Kyle's mom washed the front part of my hair. I can't wash it all because my stitches have to remain completely dry and can't get wet. But having the front part and my bangs clean made a huge difference. For a girl who washes her hair every day, going a whole month without washing my whole head is as close to torture as I can get. I'm making little strides here and there, but the best part, I get to see my baby. I still can't pick her up or carry her. I can't really even hold her. But someone will hold her next to me so that I can love on her and try to hug her. It hurts my heart that I can't wrap her up tightly, but seeing and touching her is enough for now.

She has grown so much. I just laid over her and cried when I got home. I missed her so, so much. She is saying "da-da," she loves oatmeal, and we fed her carrots for the first time last night.

When mommy got home:)

Playing footsies with mommy:)

We still have to keep an eye on my incision and watch for infection. Since my infection was so close to the brain graft, there is still a possibility that it could infect it, and then I would have to have the surgery over and they would have to replace the graft completely. It could even happen a year down the road. But I'm not going to worry about that right now. Absolutely nothing I can do about that.

But for now, all we do is wait. I will hopefully get my stitches out in 10-14 days and then I can wash my hair. Happy, happy, joy, joy. I've been through quite enough this year to last me a few years, and I hope and pray that God agrees that two brain surgeries is enough for this girl. And I hope he agrees that I've handled this the best way I knew how for everyone involved, and that he will heal me completely. And if there is anything else that I've learned, it's that I'm one blessed, loved and lucky girl.

And with that, I'm going to continue to heal, blog about my growing daughter and hopefully plan a beach trip very soon.

Thanks for taking the journey with me:)

TWO brain surgeries...and I'm still here! (Part 1)

That's right. Two. Not one. Two. In my last post, I told you about how I had been diagnosed with a chiari malformation and was going to need brain surgery to remove a piece of my skull and C1 vertebra and insert an artificial dura graft into the covering of the back of my brain. Much has happened since then, my friends, and let me tell you - it has not been all rainbows and lollipops. It sucked. Major.

I'm going to break this down into two parts for you - the first surgery and what happened when I got home, and then pick the second part up with the dr. visit that initiatied he second surgery.

June 30 was my last day of work. My partner-in-crime Mal and our amazing intern Ansley got into a great place - a place where I felt comfortable turning everything over to them. They are rockstars, and my to-do list had died a painful death thanks to my perserverance. The saddest moment of the day (and one of the highlights) was when they gave me two cards that were filled on the inside and back with messages from my coworkers. It reminded me why I love the people I work with so much. The other highlight of the day was flowers from my hubby - it was also our 4-year wedding anniversary. We have been together for 10 years, and I have to say right now, I never would have made it through this without him.

That brings me to another confession. I have gotten so many amazing comments from so many people commenting my positive attitude and insight. Some even called me inspirational. I've tried to be honest throughout my entire blog, and that's why I feel like it's necessary to tell you the truth. I'm not inspirational or special. I didn't handle this situation better than anyone else would have. To be completely honest - I have never been so scared in my entire life. Have you ever had to pray to God to just let you live, so that you could watch your daughter grow up and be a mother to her, to be a wife to an amazing man, to be around when your sister has her first child (she's not pregnant, by the way), to see your sister-in-law walk down the aisle (even if she says it's not happening until she's 30), to not make your parents go through the pain of losing their daughter? I have. I did. Many, many times. When I was home alone, I used to sit in Ella's room and just cry. I cried in the shower so many times, I lost count. I cried on the way home from work constantly. I even listened to country music. I hate country music. And you know what - The Band Perry can suck it. The rest of the truth is - I wanted so badly to believe everything that I said to everyone else. If I acted like it wasn't a big deal, then maybe it wouldn't be a big deal. The way that I was trying to handle it on the outside, the attitude that everyone else saw, I thought that if I put it out there enough, it would eventually happen - that I would eventually feel that way. The other reason is that I didn't want my family and dear friends to know how truly scared I was. I didn't want this to be any harder on them than it already was. My goal was for it to be as drama-free as possible, and for the most part, I think I achieved it. Until now, at least, since I'm spilling the beans. But it's ok, because I'm here. So no worries.

On to July 5- Surgery Day. I had to be at Emory hospital at 5:30 a.m., and I was my doctor's first patient of the day. I got up at 3:30 a.m.and washed and blew dry my hair because I knew it would be the last time for a while. Mom, Dad and Kyle went to the hospital with me, and Kyle's mom stayed at the house to be with Ella. When they called me back, Kyle went with me and helped me change into my gown. Then the anesthesiologists came in, one on each side, and began to explain everything that was going to happen. I was going to have a huge IV in each hand, plus an arterial line in my left hand. Once I was asleep, they would insert a breathing tube and shave my hair. They injected medicine into each hand to deaden it, and it hurt like a mo-fo.They then spent several minutes trying to find veins. Thanks to my mom's genes, I've got tiny veins. So they talked to me so that I would pay attention. The anethesiologist was able to get my A-line in pretty quickly, but they both had to dig in my hands for several minutes before they were able to get the IVs in. So long so that they had to inject more numbing medication.

I got to see my family one more time, and then the anesthesiologist resident wheeled me back into the OR. She asked if I had any questions. I told her that I just wanted to make it back to my baby. She said she would make sure of it. Next thing I knew, I was waking up to the same resident telling me where I was and that it was all over.

Me trying to inject a little humor into the Pippi Longstocking situation.

The first scar. The nurse said they were very generous with shaving my hair.

The surgery went as planned. They removed the bottom piece of bone from my skull and a piece of bone from my C1 vertebra. They then sliced open the dura, or the covering of my brain, and they sewed in an artificial graft that allowed it to stretch. This gave my super smart brain more room to grow and prosper. After surgery, they let Kyle come see me in recovery. The first 2 things I said to him: "I love you. I didn't die." Then they moved me to ICU, where my family was able to come in and visit me. My cousin Teresa even surprised me. It took me a few minutes for me to figure out who she was, but I remembered it brought a big smile to my face. I don't remember a whole lot, except that it was really hard to talk and I was dying to go to the bathroom. With the use of medical technology, the nurses were able to relieve me (I have a mental block when it comes to bedpans), and with the use of good drugs, there wasn't much time to talk - just sleep. Kyle spent the night with me in ICU (he had to stay in a family room connected to my room and wasn't allowed to sleep right in my room), and the next day my family returned.

The next day was harder. I was more alert, so I was in a LOT more pain. I couldn't lift my head, let alone turn it. I had to call the nurses every time I had to roll over. And the pain medicine immediately made me throw up. Do you know how bad it sucks to throw up when your head and neck are held together by stiches? I do.  I was also alert enough to know that I really had to use the restroom. The nurses decided to torture me and refused to give me a catheter. Sounds gross, I know, but with all the IV fluids going in me, my bladder was literally about to burst. Since bedpans and I don't mix, I knew the only choice was to get up. The other hurdle, though, is that with all the narcotics, I was hallucinating. I thought I was carrying on conversations and calling nurses, and I never was. Each time I called a nurse, it took me a while to figure out how to actually do it. I finally called a nurse and she helped me to the restroom. I've never been in so much pain.  My childbirth was nothing compared to feeling like my head was literally going to rip off my neck.  After I was able to do that, they decided to move me out of ICU and into NCCI.

Once there, my whole family was able to come in and stay with me. It also meant that physical therapy was able to come torture me for a while. I was only able to walk to the door and back to the bed before I needed to lay down. And just like with pregnancy, I was only able to lay on my side due to the nasty incision down the back of my head and neck. So my hips were in constant pain. The upside to the room was that people could stay in the room with me overnight. I am so fortunate that I was never alone. I always had at least two people with me at all times. Kyle and my mom stayed with me a few nights, and my mom and Brittney stayed with me a few nights so that Kyle could go home and see the baby. His mom and Allie stayed at our house with Ella the whole time so that we could keep her schedule in tact as much as possible. That was probably the hardest part about the entire experience. I hadn't been away from my baby girl for one night since she was born. And all of a sudden, I went days without seeing her. It was the lowest point I ever felt. I knew she was in good hands, and that helped, but I still missed her desperately. I just kept reminding myself that I had to get better for her.

It was hard to get a good night's sleep. I was calling for pain and nausea medication throughout the night, and nurses and techs were constantly coming in to take my blood pressure, temperature, heart rate, prick my finger to get my blood sugar and to take my blood for blood work. By the time I left, I looked like a bruised pin cusion.

The other problem was my appetite. I didn't eat or drink anything for more than 2 days, thus the IV fluids. Eventually, Kyle, Britt and Mom took turns feeding me bits of grapes, melon and bread. They also kept the lemon lime gatorade coming. It was about all I could handle. The upside - I lost 8 pounds:) Then as I got stronger, I was able to do more with PT - I even walked all the way down the hall and up and down a few steps. I even managed to take a bath. I know, sounds simple, but it wasn't. Not in the least. Once I was able to accomplish all these tasks, and my pain meds could be taken orally, they decided to release me.

My surgery was on Tuesday, and I was released on Saturday.

My stitches after a few days

That brings about Part 2. Coming up...

Saturday, June 4, 2011

Really? Brain surgery? Really? Really!?

Yeah, the title pretty much sums it up. Well, not really, because it's kind of a long story. But in a nutshell, I have to have brain surgery. My ginormous, intelligent brain finally turned on me. Go figure, right?  It is kind of ironic that the thing that's kind of been my thing for so many years, the asset I've really relied on, is causing me so many problems. It's been a good running joke, though. Even my grandparents said, "Well, I always knew there was more knowledge in there than her head could hold!"

Ok, so I'm going to go through the whole story the best way that I can. If I tend to ramble, I apologize. I have many, many thoughts running through my malformed brain, so it's hard to type them as quick as they come to me. First, I know that this is no big deal compared to what a lot of people (even people I know) have been through. This absolutely could be worse, and at the end of the day, I'm fortunate. Even though I'm going to have a little bit of a pity party and whine in the following paragraphs, I recognize that I'm blessed. Second, let me say that I do not want my blog to become all about my "condition." As far as I'm concerned, it's no big deal. If I was having my tonsils removed, I wouldn't devote a blog to it. Just because it's called something else, in this case - brain surgery, doesn't mean it needs an altar. There are many people who endure things far worse than this; there are many people who create blogs as a way to process what they are going through; there are people who blog about their conditions as a way to give/receive information. I'm not doing any of that. This isn't life-threatening. I don't need to cope - I had my meltdowns, so now it's onward and upward. And I'm not in the business of really giving information - what I've learned is that there is a lot of bad information out there, and I don't want to contribute to the problem. Additionally, this isn't a process. There is no story and no updates. Otherwise, it might warrant more attention, but there's really only enough info for 2 or 3 posts. I will blog about it now, because I want to tell you about it. And then I will probably blog after my surgery because, really, what else am I going to talk about? And then, hopefully, that will pretty much be it. So, moving on...  (and this will be long, so bear with me or take it in intervals)

If you are close to me or read my blog, then you know that in November/December, when I was 7 months pregnant, I got a sinus infection, bronchitis, an upper respiratory infection, etc. You name it, I got it. This entire time, I had a terrible headache in the back of my head that never went away. I've always suffered from migraines, but this was different. Every time I coughed, sneezed or blew my nose, it felt like the back of my head was going to explode. I chocked it up to a sinus headache and didn't give it another thought. Headaches are just a part of my everyday life, and I know how to deal. No biggie.

I was incredibly sick from then up until I gave birth in January. During that time, I was coughing violently and vomiting often. Not from nausea, just from coughing. I was miserable. And then in January, I developed preeclampsia, was hospitalized twice and ended up being induced 5 weeks early. Despite all of that and Ella spending four days in NICU, I now have a beautiful, healthy baby girl. As soon as Ella entered into this world, every single cold symptom I had disappeared, but the headaches didn't. Considering I wasn't getting any sleep and wasn't sleeping more than 2 hours at a time, I attributed the continuation of headaches to that.

But then Ella started sleeping through the night and I started back to work, and I continued to have a headache every single day. Always the same - back of my head. Most of the time, I just woke up with them. But coughing, sneezing, laughing...anything like that...either brought it on or made it worse. They also started to progress to causing pain in my neck. Most days, I couldn't (can't) turn my head. I definitely couldn't check my blind spot when I was driving. There were days that I couldn't even look down at Ella when I was feeding her. I couldn't lean down in the floor. My movement was incredibly limited. Everything hurt. The only relief came from lying down. The pain would almost completely disappear when I would lie down. This was another sign that it wasn't my normal headache. Anyone who suffers from migraines knows - simply lying down doesn't erase it.

So I decided to go to the chiropractor. Bless his heart, he tried. But he made me feel worse. I went several times, and after every visit, I hurt more than I did when I walked in. So I decided to go to the neurologist and rule out anything serious.

During my initial neurologist visit, he examined me and said it sounded like I had a bulging or herniated disc and that we needed to do an MRI to see what was going on. Then, on my return visit to review my MRI, he told me that I actually have what is called a chiari malformation. It's a congenital brain malformation in which the bottom of my brain, called the cerebellum (or specifically, the cerebellum tonsils), protrudes into my spinal canal. It occurs when part of your skull is abnormally small or misshapen, therefore pressing on your brain and forcing it downward. When the cerebellum is pushed into the upper spinal canal, it can interfere with the normal flow of cerebrospinal fluid, which protects your brain and spinal cord. This can lead to the blockage of signals transmitted from your brain to your body, or to a buildup of spinal fluid in the brain or spinal cord. The pressure from the cerebellum upon the spinal cord or lower brainstem can also cause neurological signs or symptoms. It's uncommon, but not unheard of.

This is what a chiari malformation looks like. A normal skull and brain are on the left. An example of my ginormous brain is on the right. The cyst in the spinal cord is a symptom that can occur if left untreated. 

Most people who have it never experience any symptoms and live life never knowing. But for some people, like yours truly, symptoms start appearing in adulthood, usually in your 20s or 30s. So basically, my skull is too small for my genius, ginormous brain. And the fact that it's trying to stuff itself down my spinal canal is why I feel like the back of my head and neck are going to explode at any given time. Luckily, headaches and neck pain are the only symptom I have. It's possible that my tendency for passing out is from my chiari, but there's no way to know for sure.  Other symptoms include problems with balance and motor skills, numbness in the extremities, dizziness, difficulty swallowing, sleep apnea, vision problems and slurred speech.

After a diagnosis, it's pretty black and white. Either you fix it, or you don't. I'm not in love with my neurologist, so I skipped the neurosurgeon he recommended and did my own research. I ended up at Emory with a neurosurgeon I love. I've also been incredibly fortunate to have people well connected within the medical field who were able to reach out to their contacts regarding my selected neurosurgeon. They've all reassured me that my doctor is the best there is to treat this condition. So that helps a lot.

My appointment with the neurosurgeon was Thursday, and again, it was black and white. Kyle went with me so that we could both ask questions and learn as much as we could before making a decision. I asked what would happen if I chose not to treat it. His answer: A life with chronic pain. My daily headaches would almost certainly get worse, and I would have to take medication daily for pain management. It's also possible that I could develop the other symptoms that are common with chiari malformation. It's also possible that I would develop syringomyelia, which is a fluid-filled cyst that develops within your spinal cord. And that beauty can lead to a whole host of problems, which I'd rather not explore.

So basically, that's it. I'm having brain surgery at Emory on July 5. My pre-op is on July 1. Here's hoping that my brilliant neurosurgeons don't have a rip-roaring good time on the 4th of July. I don't need any hungover brain surgeons cutting my beautiful head open. That brings us to the actual cutting open of the head...

The procedure is called posterior fossa decompression, and it will only take 2-4 hours. First step, they have to shave the back of my head. This has been the second biggest reason behind my meltdowns (I'll get to the first one later). I love my hair. I've always loved my hair. Most of the compliments I get are about my hair. And they are going to shave it. Granted, it's not all of it. It's not even most of it. But "some" is more than enough for me. I know it's terrible to complain about it because there are so many people who lose all of their hair, and in that respect, I'm incredibly fortunate. But I'm still upset about it. I'm going to have a 2 inch wide strip that runs from the top of the back of my head down to my neck. My surgeon said that my hair on top would cover up my buzzcut and gnarly scar, but it doesn't comfort me. They are still shaving my head, and it will take a really long time for my hair to all be the same length again. I'm sobbing now, and just thinking about it...I can't breathe. I know it's vain. But I don't care. I don't want them to shave my hair.

So after someone who doesn't cut hair for a living shaves my head, they are going to make an incision that runs down the middle of the back of my head to the base of my neck. Then, they are going to remove my C1 vertebra and a small bone from the back of my skull, relieving pressure by giving my brain room to expand. Depending on what they find, they may also carterize the bottom of my cerebellum tonsils so they shrink up. After they remove the bones, they will open the dura, which is the covering of the brain, and replace it with a synthetic material that stretches. That will enlarge the opening and give my brilliant brain even more room. Then, they'll sew me back up. People who have this surgery are afterwards knows as "zipperheads" due to the lovely scar we're left with. Yeah, I'd rather you just call me Ashley. Hell, call me Sarah. Just don't call me a zipperhead. Power to the people who like it, but that's just not me.

After the surgery is complete, I will spend a day or two in ICU, then be moved to a regular room for a few more days. The biggest reason is pain management. Apparently, this particular brain surgery is incredibly painful because they cut through all the muscles in your neck. Awe-some. I have an incredibly low pain tolerance, so I'm definitely not looking forward to this part. But, the way I'm choosing to approach it is - thank you, God, for getting me to this part.

The three biggest complications (after the real biggies - you know...paralysis and death) are a collection of fluid (a big m word that I can't remember), infection (meningitis is the biggie) and leakage of spinal fluid. The surgeon told me that almost 100% of people have the fluid build-up, but that it usually remedies itself. This is because the patch they sew over my brain isn't watertight, so there is a little leakage. He said that if I can get past 8-12 weeks and not experience infection or spinal fluid leakage (which is the most serious one), then I'm as good as home free. One of my main desires was that in a few months, I could pretend like this never happened. It looks like that may be possible.

I did a lot of research after I found out what my problem was (shocked, right?), and I really did myself a disservice. There is a lot of great information online, but there was a lot of bad information too, and all it did was terrify and sadden me. One small example - multiple blogs of people who had this condition and surgery said they could never, ever ride rollercoasters again. If you know me, you know I love Disney World more than anyone my age should ever admit. Sorry, but I do. And I've been counting the days until I can go to the Wizarding World of Harry Potter. So when I read this, I told Kyle that, if that were the case, he was taking me to both places so I could ride everything once more.Luckily, my surgeon told me that this isn't true. I also read that I couldn't pick my child up for 6 months and that I couldn't drive for 3 months. These are partly true, along with some other junk, so that's where I'm heading with this now. The other downsides, other than them shaving my head, having a gnarly scar and enduring quite a bit of pain:

5. I have to miss Kings of Leon, which I have non-transferrable, non-refundable tickets for. I also really, really love them.

4. I have to take 6 weeks off work. This wouldn't be such an issue if I hadn't just taken 12 weeks off for maternity leave. No, I don't think I'm THAT important. Yes, I work with ROCKSTARS, and I know they can handle it. But that doesn't matter. I have a responsibility to them, which I take very seriously. And so far, this year, I'm failing them miserably. Additionally, my most outstanding meltdowns regarding this topic have been with them. In addition to failing them, I'm probably driving them bonkers.

3. My sister and her husband are going to be in Las Vegas when I have my surgery. I'm thrilled for them, and the downside isn't that she won't be there. The downside is that she wants to cancel her trip. I've begged her not to, and she has agreed. And she better keep that promise. I'm already inconveniencing way more people that I've ever wanted to, and I'm doing it for the second time in four months, and I don't want to add her to that list. Read this, Brittney: if you cancel your trip, I will absolutely pop a stitch. I mean it. Thanks to the time difference, you will be asleep in Vegas when I'm having this thing done, and when you wake up, it will be to a phone call that everything is A-OK. Got it? Good. I love you. XOXO

2. I'm inconveniencing everyone I love. I will need someone with me round the clock for 6 weeks. I'm putting them through something for the second time in four months, and it's not fair to them. My parents, Kyle's parents, our sisters (and brother-in-law)...and especially my amazing, wonderful husband. He spent every night in the hospital with me when I was there for the two weeks surrounding Ella's birth. And I'm doing it to him again. Not to mention the fact that I'm coming home with a less sexy back of head and neck. No more head rubs for this girl. Or ponytails, for that matter.

1. The number one thing, the thing that has caused me the most heartache and has been the biggest source of my meltdowns, has everything to do with my beautiful baby daughter. I'm supposed to be planning her first beach trip, not brain surgery. She and I have matching birthmarks on the back of our necks, but after they cut through my head and neck, they won't be the same anymore. She will never remember this, and I'm eternally grateful for that. But I can't pick her up for 2 months. That's better than the 6 months that I originally read, but still. I can hold her, but someone will have to hand her to me. I can't be left alone with her because I can't pick her up. The most important job I have is to be her mother, and I can't really and completely do that for 2 months. Luckily, there is no shortage of people who want to take care of her. But I just wanted this year to be fun and carefree, and so far, it's not shaping up that way. The most important thing, though, is that I come home to her in the end. I will work through everything else.

Ok. So I think that's it. I told you that I'm having surgery, how I found the problem, what it is, symptoms, treatment, complications and downsides. I think that covers it. So let's end on a positive note, shall we? This really sucks, but it could absolutely be worse. I'm going to a great hospital and have an amazing support system. And when it's over and done with, I will have an improved quality of life - no more headaches, no progression of the condition and no further symptoms. And one day, when my baby girl has a problem, I will be able to tell her how I handled a less than fabulous situation with humor and rationale...after a few meltdowns, of course. Not only that, but it gave me a great topic for my 1,000th tweet, and I have a wide variety of Halloween costumes now open to me. I'm also looking forward to the perspective that I'm sure to have after this is all over. What is spilled milk, really, compared to this? Nada:)

So...that's it. Carry on:)