Things No One Tells You

When you are pregnant or have a new baby, there's always someone there to tell you the secrets of being a mom. You get hints on how to bathe her, feed her, change her, play with her, get her to sleep. But there are things people don't tell you, and you don't think about until they happen. Some things I didn't know:

• Apparently, when you become a mother, you now have this intrinsic love for babies, real or fake. And when one is in trouble (yes, the fake ones, specifically Renesme) your heart immediately goes into protection mode (hello, fake baby!!!). 
• Vomit/drool is nothing to be concerned about. Yeah, so what if I have a drool mark on my black shirt? I'll be wearing it to work anyway because who the hell has time to do laundry?
•  Your baby's poop is completely different than other babies' poo. Now I am definitely not saying ANY poop is awesome, but for some reason, hers isn't nearly as bad as someone else's dirty diaper.
• You make up things your kid "likes". Yup, Callista likes giraffes. Because I like giraffes. So obviously she does too. I'm sure she will have a complex later in life because I've forced these upon her. 
• No matter how bad of a day you have, one tiny little smile from your child can erase it. Seriously, just one.
• Babies make you do incredibly stupid things. Make squeaky noises with your teeth. Hang your tongue out the side of your mouth. Make ridiculous sounds with your nose. All of those things that everyone else would think look incredibly stupid, but you don't care because it makes her laugh. And then  you laugh. And she laughs harder. And then you all look like a bunch of ninnies anyway.
• Babies speak at highly inapprorpriate times. All the time. That moment of silence in church? Not for her! Sermon takes too long? We shall yell and tell him to wrap it up! Doctors are sharing information with mommy and daddy? Oh no, it's all about her, and she let's you know. 

I'm sure I have more to add, but right now, these are what come to mind. Callista's daddy and I went out to do something for ourselves last night for the first time in a long time. We saw Breaking Dawn (excellent!) and I was glad we got some time away. But darn was I glad to be home to see Callie after a long day away. Of course, mommy is having a strange allergic reaction to something since Saturday and at any random time during the day I look like I've gotten a bad dose of botox in my face and my arms and legs are a beautiful shade of pink/red. Total hotness.

After that super cute description, I'll end on a positive note. My baby girl is ten months old! *GASP* I am not sure how this happened. I am not sure why I am now pinning a million and one "first birthday" themed items on Pinterest. Where did the time go? We aren't reaching our milestones on time, but make progress everyday. Our new therapy goals are to have Callie sitting assisted by her first birthday and first bracing by 18 months. Our other goal is to have her eating some by mouth by her first birthday (everyone loves cake!). Wish us luck in meeting these goals and making progress!!

Happy First Butt Day!

Yes, you read that right. Today is Callista's butt day. What is a butt day, you ask? It's the celebration of the first day that Callie's little bottom first entered the world. One year ago today we were in Tennessee at the wonderful Vanderbilt children's hospital prepping for surgery. One year ago today my baby girl was 22 weeks along and had her very first surgery. One year ago today this mommy was a huge mess but found the strength to go through with something that had the possibility of changing our lives for the best or for the worst. And I don't regret a moment of it.

I can't say it was easy. It was by far the scariest day of my life. But was it worth it? Hell yes it was! Our little girl has an L1 lesion with no normal spine anywhere below that. Should she be able to move her legs? Wiggle her toes? Probably not. But she does, and we are so thankful.

None of this would be possible without my amazing doctor, Dr. Mingeone. Without him, we'd have probably found out about fetal surgery on our own, but his encouragement really led to the decision to do it. His faith in Callista before she was even born was just astounding. The staff at his office were so supportive and I can't say anything but praise for the positive attitudes. I was so thankful to be able to come home after the surgery thanks to this awesome team being here to take care of us! I also want to thank Mary from Vanderbilt. She was so honest with us, and so informative even over the phone just talking us through the initial steps. She put up with my endless calls, endless questions, and endless breakdowns while on bed rest afterward even! Of course, everyone on the Vanderbilt fetal surgery team has my never ending gratefulness (if that's a word!) for doing such a fantastic job.

So happy butt day my darling daughter! You sure are loved!

Plague Monster

The plague monster has struck our house! Poor Callista has been so sick for about a week now. Her nose is stuffy, she is throwing everything up, and she just all around doesn't feel good. We took her to the ER Monday afternoon because her secretions were making her choke. Of course, in true ER style, they can't just look at the symptoms of her, everything is OBVIOUSLY caused by spina bifida. So we spent seven hours waiting on them to x-ray her shunt, MRI her brain, and ultimately get a head ultrasound. She wasn't having any of the MRI and held her breath. They decided to do a head ultrasound instead so that I could hold her. It turned out her ventricles are actually smaller than the last one, so we were pretty excited to hear that. After they sucked our insurance dry, they said the problem could be: 1) a cold. 2) a bad case of reflux. And then we went home with a script for a suction machine.

Thursday we took her to her regular pediatrician. It was supposed to be a well baby check but she obviously wasn't well. She still got her shots and growth charting done. She weighs 16 lb, 10 oz and is 26 inches long. She is in pretty low percentiles but the doctor says as long as she is on a curve, that's what matters. I supose SOMEONE has to be the 9th percentile, right? He said her bad reaction to the cold can be caused by her reflux because the cold causes her to gag, the gag causes her to reflux, and then the reflux causes the mucus from her cold to be thicker. Vicious cycle I guess. It's been about a week now and we see no end in sight for her yucky cold. What's worse is now Daddy has it too I think.

For now, we are just going to stay holed up in the house for the weekend with our humidifier, some zofran, her favorite blanket, and mommy cuddles. Here's hoping she kicks this thing soon!

Quick Update

During nap time I actually have a moment for a quick update. Callista is making great progress in her PT and OT treatments. At out last PT appointment, she held her head up for about ten minutes (with a few breaks, but still sitting up). She has to get splits for both of her thumbs since she still doesn't hold them out like she should. Of course, our little Houdini gets out of them in a matter of minutes. Her first one was soft and she was out of it and it was broken by the time we made it home from therapy. She was switched to a hard one the next appointment and she had her thumb out of the ribbon and behind the splint by the time we made it to the car.  So we are still working on that!

For once, we don't have anything much to update on and for that we are thankful!! We have officially been home for the longest we've ever been home and enjoying every minute of it. Since the vesicostomy, things have gone so well for Miss Callie. No more UTIs, woo hoo!! We are still dealing with severe reflux, but she is gaining weight and not aspirating so no one is concerned right now. What a great couple of months it's been :)

Diagnosis- One Year Later

I don't talk about the events of "the bad day" in detail very often, because even to this day my body tenses up and I feel like I relive it again. The feeling you get is unlike any other you've ever felt in your life. It's a feeling only a mother "senses", when the silence is just too long.

I remember every little thing about the day, before, during, and after the events. It's funny how little things stick with you when a major event like this happens. I remember exactly what happened at work that day. I remember I was wearing my purple print skirt and white cardigan. I should have gone to that appointment alone, my husband was working. But all day, people were asking me if i wanted them to come with me. I told everyone no, it was just routine. My husband was able to get someone to cover for him for a few hours so he could come to the ultrasound. I t was overall just a really bad day for me and truth be told, I'd already cried BEFORE we even went to the doctors... All the signs were there that day that something was wrong.

We waited a long time for the ultrasound. It was about an hour late, and my husband thought he'd have to leave before we even got back there. We finally got to go back as the last appointment of the day. The tech asked us if we wanted to know the gender, but we already knew we were having a baby girl from our "fun" 3D ultrasound. She immediately confirmed it was a girl. She started telling us what she was looking at and after a few moments, she was absolutely silent. After what seemed like an eternity, she told me she was going to go get the doctor. I looked at my husband and told him that something was wrong. I could see it on his face as well.

When the doctor came in, she didn't say much, just started looking at things with the ultrasound. After only a few minutes, she informed us that there were some abnormalities and I needed to get dressed and come to her office. I was numb as we walked through the hallway, numb as we sat in the chairs, and numb as we first heard the words "Neural Tube Defect". Otherwise known as spina bifida. She threw out terms like "banana sign", "chiari", and "hydrocephalus". All I remember thinking was-- this can't be true, she moves all the time! She kicks all the time! Spina bifida means she is paralyzed and it's just not true. My OB had no information to share with us. She walked out of the room and just left us there, left us there to process on our own. After a short amount of time, we were handed a folder about Maternal Fetal Medicine and an appointment in Columbus, and we were basically pushed out of the office-- After all, it was closing time, what was a devastating blow to a family compared to wanting to lock up and go home?

What else does a girl do but call her mom to come get her? My husband had to go back to work after all this just to close out his patients with the new shift. So my mom took me home. And I Googled. And hated everything I saw. For being such a great research tool, the things you see when googling SB are SO outdated. Outdated as in false information. Outdated as in scary as hell. DO NOT GOOGLE. Plain and simple. It's hard to stop (said the girl who googles everything). But it's bad for you so just don't. I wish I hadn't. I wish I'd waited for Dr. Matt. I wish I'd waited for the wonderful nurses and doctors at Vanderbilt. Because I spent 24 hours thinking my baby would be paralyzed, would have brain damage, or maybe even wouldn't survive past birth.

This was literally the worst day of my life. Nothing else can compare to the pain and the grief over the loss of your normal pregnancy. It's weird moving into that area of unknown. Think about it: You get pregnant, you know how a baby is supposed to progress. Your friends have told you all the horror stories of labor. You've gotten all the hints from your mom and mother in law. And then you are dealt a new hand out of a blank deck of cards. No one can tell you what your baby will be like, no one can answer your questions with anything other than "we won't know until she's born". I've read several times throughout the last year where women like me have given other women the great advice to grieve over your "lost normal baby". It's natural to grieve because you lost the child you "knew" and are faced with uncertainty. For instance, October 4th, I wasn't thinking "I hope I get a surgery where they take my uterus out of my body, cut it open, and perform a second surgery on my 22 week gestation infant." (Yeah, dramatic, LOL). I wasn't thinking about the fact that my beautiful baby girl would endure six surgeries within 7 months of her life (or the fact that she may have to have more...).

If I knew what I know now, I'd still have worried. I'd still have cried. I'd still have asked God "Why me, why us?". But if I knew, maybe it would have been less worry, a few less tears, and instead of asking "Why", I'd ask for help through the rough parts instead. I know saying this now isn't going to help future SB mommies worry, cry, or ask less and give more. Each of you in turn will experience this epiphany on the birthday of your child and every day after. With every smile, the pain lessens. With every laugh, a bad moment is replaced with a good one. Every coo brings a little light to the dark spot. And I for one am looking forward to replacing this event on my list of important moments in my life with more important ones, like her first word, her first birthday, and yes, her first steps. All I can say to anyone in any crisis, not just SB, is HANG ON. I hit the jackpot for hanging on, for doing something not many people have to experience... This is my reward:

 

Celebrate Spina Bifida Awareness Month with us and spread the word that our babies are happy, awesome babies and deserve a chance to show the world :)

Appointments and Sit Ups

We had myelo clinic last week and all areas had good reports. Urology is happy with her vesicostomy. PT and OT all said she made improvements and commended our home PT and OT for doing great jobs. We didn't really get to talk to neuro but they checked her shunt and said all was well. Physical medicine was a bit concerned about her left leg, but ortho came to look at it and had no concerns. Her hips have always been under great scrutiny and she's had I don't know how many x-rays of them for everyone to decide her sockets are shallow. Her left leg always appears shorter than the other, mostly due to her muscles being so tight up the back of her leg. Once you do her stretches for PT, both legs are the same length. It just takes some effort and it's something we work on daily. We met another friend and her mommy, so happy to continue getting to know fellow SB mommies that are near to me!

In other happy news, Callista is working on her abs. Literally. She has been doing crunches lately, wanting to sit up so badly. We are happy to see such progress, but at the same time, I think it is making her reflux much worse. She had an upper GI study yesterday and they said everything is digesting fine but her reflux is so bad that once her stomach fills up, it basically shoots up her esophagus to her throat. We are doing slower feeds, and longer continuous feeds overnight to try and cut down on the amount she throws up. Weighing in at almost 16 lbs now, I don't think it has been hurting her growth!


My little brother and his new wife had their wedding reception last night and Callista got as much attention as the new married couple! We don't take her out much so when we do, everyone oohs and ahhs over her. She enjoyed the new faces and being held a lot. I do not know how, but she slept through the DJ, announcements, and constant stream of people. Then we get home and she doesn't sleep in silence. Perhaps the trick is to play really loud music? ;) All I can say is I have a REALLY good baby, and am so thankful for that!

A Bouncing Baby Girl

It's been one year since we saw the words "It's a GIRL!" flash across the screen at our Ultrasona gender determination appointment. I didn't know what would come ahead for us when we made that appointment. We made the appointment because I was impatient and wanted to know if we were having a boy or a girl, like, NOW. So yes, I paid $75 to know the gender a few weeks early. And I am so glad we did, because we had two weeks to completely and utterly enjoy our pregnancy. I had two weeks to buy girl clothes and think about how I was decorating the nursery. Two blissful, happy weeks. What a blessing for us, to have had that positive experience rather than having the fact that we were having a little girl be eclipsed by a piece of news we never in a million years expected to hear.

I didn't even know about Ultrasona until we ate at the Japanese Steakhouse and sat by a woman who had a new baby girl. She told us her and her husband did it to find out the sex before he left for Iraq. This woman was put in front of me for a reason, and looking back, I wish I could thank her over and over again for leading me to a few weeks of joy.

Now my baby girl is almost eight months old and growing like a weed. She's come a long way from looking like the alien baby we have in those 3D pictures! We are still learning how to be our own kind of normal and we're getting there. We learn something new almost every day and we're just as insanely in love with our little girl now as we were a year ago <3