Update

Yikes! Sorry for the mysterious disappearance. I always say I'm going to blog more and then go through a period of time where I get so caught up in what's happening in life I completely forget. Well here's my update.

• Father's Day- Was awesome. We got Steven a grill, new fishing pole, and went camping! He seemed to really enjoy it :)
• Job Change- Steven's dad ended up firing him and now he's back working nights at AG. Because of the change we ended up selling his truck to make our bills and it's all just been really hard on us.
• New schedule- No more evenings spent together. Just whenever we thought we were getting life figured out, eating dinner together every night, spending quality family time together everything gets flipped around on us. Now Noah and I are alone all afternoon, evening, and night. Instead of having a partner to share the responsibilities of parenting with I'm now doing it by myself. I have to take Steven to work every day and get Noah up at 11 every night to go get him. It takes 30 mins to get there and 30 to get back. We're stressed and tired all the time. And still behind on bills, I might add.
• Noah was admitted to the hospital for excessive vomiting and suspected shunt malfunction, thankfully it was only a 24 hour stomach bug and we came home the next day.
• Noah's surgery is in 2 weeks and we're all very anxious and worried.
• Literally the only thing getting us by is each other. So thankful for all the support and love we show each other every day.

Only three months until Noah's Birthday and I haven't planned one bit. He's starting to army crawl and is still unable to sit up unassisted. But we're getting there. He still smiles all the time and gives me hope. I'll blog later.

Mother's Day is so Bittersweet

I woke up this morning to the sound of my baby whimpering and laughing through his monitor. The sun shining through my blinds and Toby curled up by my feet. I walked into his nursery and paused for a second, looking down at him. Laying there playing with his teddy bear so happily. I smiled and said good-morning as he slowly grinned back and giggled. Usually waking up at 6:30 isn't a very desirable thing, however today was different. Today marks a milestone. This day last year I celebrated my first Mother's Day with a baby in my tummy.

We didn't know the sex or diagnosis. As far as I knew I was having a healthy little baby. I celebrated. I was happy and innocent minded. I didn't know the world I live in now. A world that knew there were disabilities out there, but never experienced them being so close. Looking back I feel like I was just a silly girl who wanted to be a Mommy. Now I've experienced what it's like to be a special needs Mother. A woman who knows pain and suffering, yet still is able to find joy and happiness in small things.

So why is Mother's Day so bittersweet to me you may be asking?

 

A few days after Mother's Day last year we found out Noah has Spina Bifida. I felt absolutely helpless. That innocent, carefree girl was gone. It was the hardest thing I've ever done in my entire life. Endless pain. Torturous even. To give a sweet 19 year old pregnant girl a diagnosis that would change her forever. I cried and cried. Physical tears and even out to God. Asking him the reason behind this? This pain and agony. Why us? Why Noah? I remember almost too vividly the appointments. The heartache. The saddness. But one of the biggest memories I look back on is me sitting in the floor of our bedroom surrounded by all of Noah's things. One of his newborn diapers I bought, toys, clothes, wall decorations, and my Mother's Day card my family gave me.

My biggest thought was, why would God allow me to have such a perfect Mother's Day and then throw something like this at me?

It seemed like some kind of sick joke the world was playing on me.

But now I can sit and say, no. It was so whenever I woke up this morning I would remember to appreciate everything we've gone through. I got my beautiful, happy baby I always wanted. He feels unconditional love and brings so much joy to me. That's why today is wonderful and a little bit sad at the same time. Bittersweet. Yet absolutely amazing. Happy Mother's Day everyone.

Picking myself back up.

Sorry for the sad dreary blog post. Like always I've managed to pick myself back up from being so down. I searched for this poem and it really helped. It's easily my favorite. My faith dwindles sometimes. I feel guilty. I feel pain. But it's alright because I'm only human and need to see that I can't be so hard on myself. Maybe I was chosen for Noah. Maybe there is a greater reason behind all of this madness we endure. All I know is that I am strong enough to handle even the darkest, most miserable times this diagnosis will give us. And I will always be strong enough for Noah. I beat myself up for having moments of weakness but I have to realize it's okay to breakdown and cry. The biggest thing that helps me is thinking about how Noah might feel this way some day. Like life isn't very fair. And how I want him to learn to find joy in his life and pick himself back up whenever he's down too. He will always be my motivation to be a better person. I love him so much. I hope everyone enjoys this poem too. Maybe it'll hit close to home for some of you as well.

 

The Special Mother by Erma Bombeck

 

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia."

"This one gets twins. The Patron saint will be Matthew."

"This one gets a son. The Patron saint...give her Gerard. He's used to profanity."

Finally He passes a name to an angel and smiles, "Give her a disabled child."

The angel is curious, "Why this one God? She's so happy."

"Exactly", smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? Is that a virtue?'

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes here is a woman whom I will bess with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time, she will be present at a miracle and will know it! I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air. God smiles, "A mirror will suffice."

It's happening.

 

 

The moment I've been dreading since Noah was born. It's painful for me to even type it, let alone begin trying to face it.

He's falling behind in milestones.

 

Yesterday a friend of mine posted a picture of her child standing and cruising, another mom posted one a few days earlier of her baby crawling. They're the exact same age as Noah. And I mean down to the same exact DAY. My heart has been shattered into a million pieces. It feels like as soon as I learn to accept one challenge that we go through another appears and brings me back down to reality. I will never be able to take a picture of Noah crawling or standing or walking. NEVER. Sure maybe with braces he'll stand. But it won't be the same. Noah still can't sit up and it's starting to hit me that he may never be able to sit unsupported. His back is weak and he just folds in half everytime. He get's so frustrated because he tries to do these things and his body won't let him and he doesn't understand why. I love him more than anything in this entire world and to see him struggle is the hardest thing I've ever gone through.

Noah held his head up at the right milestone, he even hit the milestone for rolling. But now he's behind. And no matter how much I work with him it'll never change. He's coming up on milestones that are impossible for him to achieve. It's hard. I can't even find the words to describe how hard this is. I feel like nobody understands. Nobody ever reaches out to me and asks how I'm doing with things. So here I am saying that I'm struggling a little bit right now. I can look at healthy children and not get sad anymore. Even as young as a 1 year old. That was a big step for me. But now I have to learn to deal with something even harder. Noah is a wonderful little baby and I love him more than life itself. I know he'll make it all okay. I just can't help but feel down sometimes. I really wish I had someone to talk to who understood. Sigh. Vent over.

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:

 

 

 







Back to the Hospital we go!

Sorry these posts are so short. It's been 3 months ago since all of this happened and I can't quite remember all the little details anymore and just want to catch up to now :)

Anyway, Noah started fussing and crying non stop. He's not a baby who cries for no reason. He mainly only cries when bored or hungry and other than that he always has a smile on his face. So my first instict was to bring him to the ER for a possible shunt malfunction. So to save time here's how it went.

• Brought Noah into Hospital on Halloween
• We were admitted to a room and had to wait until Monday to talk to his Neurosurgeon about where to go from there
• Monday came- Dr. Sami decided to take him into surgery and take a look at his shunt.
• Surgery happened, no infection, clogs, or malfunctions.
• Dr. Sami sent off a culture of his spinal fluid for further testing.
• Came back positive for infection.
• Noah came back from surgery, stopped breathing multiple times throught the night.
• Next day Dr. Sami externalized his shunt. (Picture below)

• Noah's stomach started abnormally swelling up.
• He was diagnosed with NEK (necrolizing endocitis)
• NG tube (blue tube) was inserted to take out stomach acid
• PIK line was inserted into his juggular to give him nutrients
• He was given 4 different antibiotics to get rid of the infection
• Noah developed 3 hernia due to the NEK
• Once infection was gone, shunt #2 was inserted
• After almost a MONTH in the hospital we were able to leave :)

 

We went to the hospital on Halloween and left the day before Thanksgiving. It was crazy living in the hospital that long but I'm sure glad we decided to take him in and get him feeling better.

 

 

 

Homeward Bound After Shunt #1

 

October 20th

 

After Noah had his first VP shunt placed we left about a week later. He ran a very high temperature at first because his body was rejecting the shunt but we got it under control in the hospital and he was feeling better in no time. This picture is Noah looking out the window in my van on the way home. You can still see the blue mark on his head from his neurosurgen marking what side of his little head the shunt should be on. Sweet little guy was so excited to look around at the bright new world around him. We enjoyed every single moment of having him home. We cuddled and played our days away :)

 

This picture is of Noah's 1 month birthday :) This little guy already inspires me everyday. He's spent 2 out of his 4 weeks of life in the hospital and still smiles all the time. Such a happy little guy.