What Spina Bifida Looks Like To Us

When I was pregnant I was so afraid my child would become
defined by his diagnosis. Instead of a "healthy" baby he'd be associated
as a "Spina Bifida baby" or "Child with a deformity". But the truth is,
he's not that different. He is a healthy baby who
HAPPENS TO HAVE SPINA BIFIDA.
So this blog post is about what Spina Bifida means to us.

 

S: Strength

 

Noah doesn't even realize how strong he's been.

He's gone through 5 major surgeries within 4 months.

We want to raise him to always be able to find the strength

within himself to overcome anything that comes his way.

 

P: Perseverance  

 

Perserverance means steadfastness in doing something              despite difficulty or delay in achieving success.

 

 

I: Inspiration

 

This picture was taken only minutes after his

3rd brain surgery. If this little guy doesn't spark some kind

of inspiration I don't know what will.

 

N: New Perspective on Life 

 

Living in the hospital for a month straight,

seeing your innocent baby go back to surgery time

after time, the nights when he stopped breathing, the ICU stays,

EVERYTHING

has given me and Steven a new perspective on life.

We appreciate every good moment we have.

 

A: Adoration

 

Who ever said "Special" was a bad thing?

Noah is unique and wonderfully made.

We adore him.

 

B: Beauty

 

Beautiful inside and out.

 

I: Independent

 

This one isn't fully mastered yet but he will get

there and learn to be as independent possible.

One step at a time.
 

F: Full of Life

 

Noah is a joy in everyone's lifes he's around.

Always so full of happiness and giggles.

 

I: Incredible

 

This is of Noah smiling for the first time.

Nursing in the NICU with an IV in his head

and heart monitors on. Happy as can be.

 

D: Determination

 

Working so hard in physical therapy.

Getting stronger and stronger each day.

 

A: Amazing

 

 



 I think it's easy to tell that I think my

Son is absolutely amazing. He's the most wonderful

thing to ever happen to me. Spina  Bifida has not put a damper on my love for this little one at all. In fact, it's made him all the more wonderful, inspirational and special.

 

My advice for expecting parents?

Always let your child redifine his or her diagnosis.

 

 

Helmet Time

After 4 months of weekly therapy to help resolve Noah's torticollus (stiff neck) from his shunt infection/surgeries his torticollus is finally gone and completely healed! Yay! HOWEVER, his flat head from those surgeries (and not being able to lay on his shunt side of his head) isn't rounding out by itself. So in a week or so goes and gets fitted for his cranial molding helmet. It breaks my heart that he'll need one but I'm just ready to get it on and off as soon as possible.

It isn't medically necessary, it's just a cosmetic/personal choice. We decided on a white helmet so we can decorate it freely. He'll need it on for 3-6 months. He'll need it literally on his head 23 hours a day. Big commitment but I'm ready. I'm not sure who this little girl in the picture above is (found it on google) but she definitely proves that it's easy to still be adorable even with a helmet. So hopefully Noah will be able to rock one as easily too. :)

I feel like other parents see Noah's flat head and instantly judge me. I'm sure they think that I'm just a horrible teen Mom who leaves my baby on one side all the time. Which is so far from being true. Little do they know he's had 5 surgeries and works his butt off in therapy each week to progress and heal his neck so he won't want to lay on that side anymore. I do stretches with his neck every single diaper change. That's a big commitment as well. So I just let people stare. Now he'll have a helmet and I'm sure the looks won't get any better or easier to handle but at least he'll be improving. All that matters to me is Noah's future. I'll post pics as soon as his helmet comes in. :)

Zoo Trip (Part Two)

This Monday we decided to head up to St. Louis to visit their Zoo. It's much more impressive than ours and we spent the whole day there walking around and having fun. Noah LOVED it. His favorite exhibit was still the elephants but he also likes watching fish swim in aquariums and butterflies :) It was great spending time with my little family. I enjoyed every minute of it. Soon I'll be taking my real estate class again and won't be able to spend as much time with them and just was an overall great trip.

 

Recently Diagnosed with Spina Bifida? This is to you :)

Lately I've recieved quite a few emails from mothers who just recieved news that their little ones have Spina Bifida. It's made me realize that a lot of my blog posts are fairly negative. I usually only think to blog when I need to vent and I'm not always down about Spina Bifida and Noah's health issues. So this post is directly for those Mothers who find my blog and are looking for a little hope.

So here are some positive things about my child who happens to have Spina Bifida:

• He is beautiful. He does not look disabled or different. The only physical difference about him is that his legs don't move.
• Noah is healthy. Maybe not "healthy" in the sense that he doesn't have a severe birth defect- but overall he isn't always coming down with colds or ear infections. He was approved for the RSV vaccination (which is very hard to get and many sb children do not get approved) we turned it down AND he did get RSV and wasn't hospitalized and he fought it with a simple antibiotic. He wasn't expected to yet he did.
• His fine motor skills are coming along much quicker than other children his age. He can turn pages on a book, pick things up with two fingers and has a lot of control over his arms and hands.
• He is happy, ALWAYS. He has no idea he's had 5 surgeries, has a shunt in his head, can't feel his legs or anything. All he knows is that he likes toys, Mommy and Daddy and his puppy Toby. He likes laughing, cuddling and watching cartoons just like any other child.
• YOU GET USED TO IT. This is probably the most important thing. When you hold Noah his legs dangle. You learn to manuver him anyway. To swing his little legs around to set him in your lap. Sure, it's hard putting him in his jumper. His legs get caught up if you're not paying attention. But overall it just becomes a part of your life.
• Being a special needs parent is a challenge, no matter the disability. But with Spina Bifida you can really take it one step at a time.
• When your child is a newbon they can't walk anyway. Healthy or not. They rely on you to carry them. In a carseat nobody notices your child's legs aren't moving. Maybe you have a lazy baby in their eyes.  Not everyone moves their legs constantly. Once you accept your newborn's legs don't move, they become an infant. You get used to moving them around like I said above and then they hit 6 months. You're a pro by then. Once they hit a year you start thinking about braces, walkers and wheelchairs. I'm not there yet. Noah is only 6 months. But with this disability you can really ease into it. I'm very thankful for that.

There are so many more wonderful things about Noah that I can't even put into words. The way he looks at me. Reaches up for me when I go into his room after he's woken up from a nap. His little arms tightly around my neck. His smile. He is perfect. And if you're expecting a child with SB as well I PROMISE eveything will be ok. It's not your fault. You are strong enough. It's okay to cry. It's okay to feel weak sometimes. But your baby will pull through and embrace his or her differences and so will you.

Love,

Genevieve and Noah

xo

Sometimes

 

Sometimes I wonder. Why us? Why MY child? Why Noah? Why me?

I read threw Noah's online medical history earlier because I'm trying to find some better doctors for him. I had to log onto mine and add him as my dependent. My history said, "young pregnant first time mother" "high risk pregnancy" "spina bifida defect on fetus" "anxiety".

Noah's was a much longer list that included, "paralysis" "no movement in lower extremities" "water on brain" "birth defect" and many more.

I know he has all of these things. But to read them. That's different. It's the butterflies in your tummy followed by a "drop" feeling, like when you go down on a big roller-coaster, and then a feeling that makes you want to throw up.

Why does my child have to endure this? While other's are allowed to be healthy?

Noah wants to sit up and crawl so bad. His body won't let him. I can't even begin to explain how hard it is to watch. How can you accept something that hurts your child? I will never accept Spina Bifida. I will however accept that Noah has it and his life will be very different. Even though I wish it wasn't this way. *sigh* I might post a happier blog later. Sorry for the dreary post.

Dear Noah,

Right now you're sound asleep in your crib. Sleeping so innocent and peacefully. I wonder what you're dreaming about. Daddy is watching TV and Toby is cuddled up by my feet. You're 6 months old. My love for you is completely undescribable. You are

so talkative and happy all of the time. This week I've been gone all day for my real estate class. I can't help but sit in class and wonder what you might be doing or thinking. Hoping that you're smiling and happy. Wishing I could be with you every moment of every day. Your second tooth just surfaced and you've been sort of grumpy lately. Even at your crankiest you still bring so much joy to me. I wish I could freeze time and enjoy you being this little for so much longer than the time I've been given. You are growing so fast. You are absolutely wonderful. I pray every night Daddy and I will be able to give you a very fufilling, happy life and that you turn out to be an amazing, inspirational little boy. I pray you never let anything hold you back and find joy in every aspect of life.

Maybe someday you'll look back and read this. I'm sure my love for you will never change. But it might be nice to look back and read exactly how I feel.

Love Always,

Mommy

Elephants

We took Noah to the Zoo for the first time today and he loved it! It was so much fun. Whenever Noah was in the NICU I wanted to talk to him so badly so he'd find comfort by hearing my voice. Although I had no idea what to talk about. So I would tell him that whenever we broke out of the hospital we would play together and snuggle and when he got a little bigger we'd go to the park and zoo and things like that. Being pregnant you also wonder often what it will be like to bring along your own child to something fun like the Zoo.

Oh, fun fact. Whenever I found out I was pregnant (at 3 months) the first thing I wanted to watch was Dumbo. I loved the song "Baby of mine" and listening to it just gave me a very maternal feeling. That may sound silly, but it's true. I couldn't wait  for my own bundle of joy to cuddle and sing to. I LOVED the Mother's love for Dumbo. Even though he was special and a little bit different. She's protective over him and does whatever neccesary to take care of her little one. Reminds me of Noah and I so much.

Noah's favorite animal happens to be an elephant. They were his favorite part and he has two stuffed animal elephants. Life is funny sometimes.

Here are some pictures from our adventure.

3 Months Later- Post Hospital Stay until Now

Noah has kept me so busy lately I haven't even been able to think about updating my blog.

So here's a recap of what happened between Noah leaving the hospital and now.

Thanksgiving at Home:

1st Christmas:

 

New Years:



 

Valentines Day:

 

 

First Tooth:

 

 

Lot's of smiles cuddles and playing: