Thursday, July 30, 2015

Fluffy Brains & Babies

I know what you're thinking! That title sounds like some knockoff zombie film. I assure you, there's no guts and gore in this post, pinkie swear!

As a mother to a newly diagnosed unborn baby, I was obsessed with numbers. Statistics, percentages, measurements of amniotic fluid pockets. The numbers that meant the most to me were how big Callista's ventricles were. The magical number falls between 6-10mm for ventricle size. Before fetal surgery, Callie was measuring at 12mm (an indicator of hydrocephalus and spina bifida). We hoped to maintain or decrease this number back to "magical range" but it didn't happen for us.

I cringed at every appointment when they measured my baby's head and ventricles during our weekly ultrasounds. Every time, that number slowly increased. 20mm... 32mm.... 41mm.... And every time, I continued to imagine the damage being caused to my poor girl's brain. I mean, having your brain squished so tight around the inside of your skull cannot be good, right?! And yet, I was reassured by my doctor and several other SB mommies that brain damage does not go hand in hand with our little ones. I didn't believe them. As Callista's ventricles climbed to the high 40's, low 50's in the week before she was born, I was a nervous wreck. Especially after seeing other mom's listing numbers in the 20's and showing their panicked state. Yes, other moms are obsessed with those numbers too! 20's?!?!?! I wanted to go back to the 20's!

Now, I've had about three years to calm down about numbers and I've learned not to ask unless completely necessary (which is, like.... never). Numbers mean nothing, but the old saying "A picture is worth a thousand words" rings true. Let's rephrase that to being worth a thousand measurements. These pictures are from Callista's MRI at one day old, and again from this past Monday.

*A mini MRI education session: The brain is supposed to be gray. All that white is the spinal fluid built up in her head from the flow being interrupted due to spina bifida. That weird looking black spot is where her shunt valve is, so the MRI cannot see through it.*

Look at that big, fluffy brain! That is some nice looking brain tissue if I do say so myself. When someone tells you that your baby's skull can accommodate the additional fluid, they aren't delusional. Our little ones are so resilient and I hope these photos give peace to someone who is worrying about the same numbers I once did.

Saturday, May 2, 2015

A Day in the Life of Callista

Ever wonder what it's like to care for Callista or see the world from her eyes? In celebration of her being home from the NICU for three years, here's how I imagine she sees things...

Typical Weekend (we like weekends, no appointments!)
7:00am- It's light out. It's definitely time to wake up. I see that my mother is still trying to sleep in, but it's light out. So I will yell every word I know how to say until she finally caves in. I can't move myself or entertain myself so I depend on this lady every moment of the day, even when she's tired! Don't worry though, I know she can't be mad when she sees my smiling face and I say "Hi Mama". Gets her every time!

7:15am- Mom gets me cleaned up and dressed. I like clothes, I like to laugh at them and have them covering my face even though I know that's not where they belong. I can't help mommy get me dressed since I don't know how to make my arms or legs work that way, but I try my best to push them through. My mom keeps me stylin' so I don't mind! I enjoy getting my teeth brushed, but my hair is a different story. No one can get it right, so I cry and I cry and say "There ya go!" (code for: give me that!) until someone hands me my own comb. Sure, most people might not brush their face, but it works for me!

8:00am- It's med time! I know this because I recognize what syringes are, and I am thoroughly convinced they are all water. I am also a huge help to my mommy and show her this by demanding to hold syringes as she finishes. After all, who else will work hard to put two syringe tips together over and over and over again? Mommy does that part wrong. If the syringes aren't in my hands fast enough, I am sure to throw a fit until I get what I want. Hey, that's what happens when you lack language skills. Everyone caves in and gets you what you want if you yell long enough!

9:00am- I've been saying "eat" and "hungry" every five seconds for the last half hour, so it's about time this woman feeds me. Apparently I am on a "strict schedule", whatever that means! It's finally time for me to get some real food. This tube stuff is overrated. I mean, I can't even taste it. And if I could, it doesn't exactly smell like I'd like it. But the food in the little jars, that's what I'm talking about! I'd like to eat the whole jar, but my tummy doesn't let me. Mommy usually makes me stop at 1/2 or 3/4 of a jar so I don't puke. I mean, I try to puke all the time, I don't know what the big deal is.... Sometimes I even make the adults run like crazy to grab a tube and vent me (take the air bubbles out of my stomach).  Sometimes there's a need for it, and sometimes I am just being rotten. Hehe!

So now we've got some free time. Since I can't move myself, mommy helps me go between my chair, the floor, and my playmat. Of course, we get plenty of lap time in as well, because I like to cuddle (when it's my idea). Even though I am three, I can't play with toys like most three year olds do. I need mommy to hold things for me and help me move my hands and arms where I want them to go. I have mastered making my Elsa doll sing. I do it over and over. I can tell mom likes it because she makes the best faces after the fourth or fifth time "Let it Go" has played :)

I've heard from several folks that my "core muscles" are getting stronger and I work hard at holding myself up, but some support from my special chair and my favorite lady in the world always works too! I've been trying hard to control my wheelchair too, but our house isn't made for the wide open spaces I need right now. We try our best to not run into things, but we need a room downstairs just for me! We've been working on raising money for that since I cannot use the rooms upstairs in our house. On the plus side, it's been what they call "nice" outside lately. Personally, I rather enjoy having wind blow up my nose and I open my mouth to taste it. And rain, rain is so much fun but mom never lets me hang out in it. We practice using the chair outside, which is much easier. I can go wherever I want. Sometimes I go too fast and mommy chases me. It's funny. I like to follow the cats around, and they love it (read; they are terrified but too stupid to stay out of the way).

I also love to swing. I tell mommy "outside" and we go swing on the porch. I like to eat the wind and relax in the sunshine. I'd really like to take a nap in my swing, but no one else seems to go for that idea. In fact, that's pretty much the only place I would willingly take a nap. I put up quite the fight in any other spot!

1:00p- Yay!! It's time to eat again! This time, I get some food through my tube AND some of that jar goodness too. I hope she feeds me fast enough. Otherwise, I will be sure to let her know by yelling "hungry!" and "more bite!". And don't you dare eat something in front of me, because I will be demanding a bite of that too, even if I cannot logically eat it (breadsticks anyone?!). I also get more meds at this time. They try to sneak those in there, but I am a smart cookie and I know what those little syringes do. But there's food, so I let it slide.

1:30p- Speaking of naps, it's now time for me to avoid one.

2:30p- Okay, I caved and slept. But I put up a valiant effort before finally succumbing to the tiredness that is called Three Years Old. I wasn't really tired, I swear. Now it's time to get strapped in my stander. It's this thing that looks a little like a torture device but it's awesome. It helps me stand up straight and play upright. Even though I cannot stand on my own legs, I still need to put weight on them so I can grow. My stander helps me bear weight through my hips, legs, and feet. (Here's a good read on Standers and why they are important. Not that I can read or anything ;) Since I've been using my stander regularly, my feet have grown! I still wear size 4 teeny tiny shoes. Since my feet are shaped weird due to my muscle tone and not using them, mom has a hard time finding cute shoes to fit my little piggies. While I am in my stander, I like to be wheeled around the room to move, it's fun to pretend to dance. I like to play with toys on my tray and throw them on the ground for someone to pick up.

3:00p- This one is a little personal.... Because of my spinal cord damage, I have neurogenic bowel and bladder.  That means that those parts of me don't work right and I need a little help. I have a vesicostomy (a hole under my belly button) to help my urine drain into my diaper. This way, it doesn't reflux into my kidneys and scar them. I guess these kidney things are important, because I get mine looked at pretty frequently. I don't have the ability to go #2 on my own, so every day I get a suppository to keep my belly from being in pain.

Insert more free time here. I will probably request "a book" several times. I love to look at books. I want to turn my own pages though, even if whoever is reading isn't actually done with that page.  If it's nice, we will go outside again to swing or drive my wheelchair. Or if I am feeling cranky and don't want to play with anyone, I will lay in my playmat and bang some things around. My mom does my hand and leg stretches to work my muscles and get them loosened up. I might do tummy time again. Or I might smash my face into the mat and pretend I don't know how, I haven't decided yet. I will probably sing my ABC's and watch some Disney Junior. That Sophia the First really knows what's up! I like that girl!

5:00p- Woo hoo! It's eating time again! This time, I get water through my tube and more jar food. It goes about the same as before. Better shovel it in fast mom, or I will complain to dad. And whoever else will listen to me whine about eating and being hungry two minutes after I've already eaten. This also means it's time to see Daddy before he goes to work. I love that guy. And I cry when he leaves, because in my mind, I should get to keep everyone I know and love 24/7. Who else will make funny sounds at me and talk nonsense words?!

7:00p- The lights are dimmed and I know something is up. This lady is going to try to make me go to sleep!! The big bag of night time food is on my pole and it's hooked to my tube. Ah man, maybe if I pretend to be interested in these toys she will let me stay up. Must. Stay. Awake. Cuddle time is nice though, I like to snuggle with my mom while I pretend to not be sleepy.

10:00p- Mommy tries not to wake me up when she changes my diaper on last time and gives my night time medicines. I turn on my cuteness and sing Twinkle Twinkle in my sleep. We get one more good night cuddle in and I get my beauty rest. You can't look this adorable every day without it! Night-night everyone <3

Saturday, February 14, 2015

Blog of Non-Inspiration

If you follow Callista's facebook group, you probably know I have been suffering from a huge half-case of writer's block. I sit here, write a few sentences and then trail off into a somewhat incoherent ramble. Once I reread it, it makes no sense and I decide not to publish. It's a vicious cycle in my brain and on my laptop.

But then a fellow SB mom messaged me with "You blog, don't you?". Well, crap. Yes, sort of, I am a slacker, oh no!  I mean, I've got hundreds of posts, that counts! She says "Am I the only one who gets tired of being 'inspirational' to others?" We chatted a bit more, about folks tagging her in every inspirational post on facebook, about comparing her child to other children with special needs even if there weren't actually any similarities to be had. Although I don't have the same experience as she does, I can empathize (Have I mentioned how much "God gives special children to special people" makes me want to blow a gasket!!!).  And so comes the blogging on behalf of a non-blogger.

As mothers of children with special needs, we go through trials that most parents don't ever have to experience. Our children struggle with things that typical children don't. Yes, life is much different for SN families, but does that make us something worth celebrating? I have conflicting feelings about this. One one hand, heck yeah I want to be recognized for all the additional hardships we go through and overcome on  daily basis. It is hard, it is tiring, and sometimes it goes unrewarded with progress, answers, or a good outcome. So when someone says "You're amazing! You're so strong!", I take that as a compliment, because you're darn right I am. But on the other hand, I'm just a parent. I don't want to be kicked out of the "normal mom club" just because we aren't exactly normal. I cringe when someone says "I have _____ going on, but you've got so much more to deal with". Yikes.... I won't lie, I roll my eyes a lot when I see parents complaining about their child getting into everything, how they only want to eat chicken nuggets if they're a dinosaur, or they refuse to drink anything unless it's in the one specific blue cup.  I'd trade our issues for those any day! But that doesn't mean I should be the one you rate your troubles with. We aren't the same, and that is okay.

Just as you and I aren't having the same problems, special needs moms don't always have a lot in common with other SN moms. The same goes for our children. My child with SB is completely different than someone else's child with an unsimilar diagnosis. At this point, she's a lot different than children with the same diagnosis too! The SN term is used broadly, but we are all insanely different. While we do have empathy for one another, we don't always have advice or need advice from one another. I cannot connect with a heart mama or a DS mama the way I do with my SB family. Lumping us together is the same as saying "Hey! I have a nose and so do you, we will be friends forever and ever!". I know lots of people with noses, and I don't necessarily like them all ;)

As for those inspirational memes, I need to refer you to my SB mama friend Mary Evelyn's post on her blog What Do You Do, Dear? where her family photo was stolen and made into a mushy meme. These kind of memes are well meaning and most have a great message of perseverance, overcoming odds, and living life to the fullest. While it's sweet, we don't always feel inspirational, nor do we relate, especially on our toughest days (or even on our good days!). I love to use Callista's adorable, smiling self to promote awareness for SB. Hopefully my efforts can save another child's life when a pregnant mom sees her and realizes it's not the end of the world when your unborn little gets the dreaded diagnosis. But do I want her picture or anyone elses out there with (GASP!!!) the most annoying "God only gives you what you can handle" or worse, the special children quote... Um, no thanks. Don't worry, we love God too, but if you tag me in that saying, I am mailing you a smelly sock. You can do with it as you please.

If you think we are inspirational, you're right. But not the way that the internet portrays. We are inspirational and strong because we have mastered the ability to sleep all night at the hospital with a million beeps and five hundred people coming in at 4 o'clock in the morning "quietly" banging every utensil in the room and turning on every single light while trying not to disturb you. We are strong not because our child has a disability, but because we've somehow managed to figure out how to carry a set of braces, a diaper bag, a purse, a feeding pump, paperwork, and a limp child who is offering no help whatsoever all at the same time. We are amazing not because we gave birth to someone a little different, but because we can still manage to function as a normal human being with a little caffeine assistance.  When offering support to all children and moms (yes, ALL!), recognize what we do, not who we are labeled as <3

My friend, I hope I did your feelings justice!