Good Firsts & Bad Firsts

I was a bad mommy this morning. So before i repress the memory i want to make sure i record it so little man knows exactly how UNperfect his mom is :)

At 5.5 months old, Chance experienced his first Fall, and i don't mean the kind with the pretty leaves, windy days, jackets and scary lawn decorations, although this is his first Autumn also. The kind of Fall he experienced this morning was the kind where he starts on the bed and ends up on the floor.

That's right. This bad mommy let her son roll off the bed this morning.

Let me tell you nothing can describe the sound of a baby hitting a floor. And me being maybe 10 feet away in the bathroom, screaming "NOOOOOO!!!!" as i run toward the screaming hump on the floor just doesn't do it justice.

I guess it was bound to happen eventually, these are the moments that teach us we are not better then everyone, and we do make mistakes. I'm not perfect. But Chance is pretty darn near it. True to form he cried for maybe a minute and a half and then was perfectly satisfied with a bottle of Cherry Pedialyte.

God i love this kid. I don't deserve him, but i love him.

Needless to say he just told me in the most traumatizing manner possible that, "Mom, I'm a little old to be laying on the bed by myself, want me to show you why?"

Got it. Thanks, Chance.

Now that the "Bad First" has been documented, lets move on to the happy stuff :)

Chance managed a pretty good rollover at Miss Sarahs. Mommy didn't get to see it, but i'm so proud anyways. He even mastered the more difficult "back to front" roll! At 5 months, we had been led to believe he would be behind in the physical milestones - but he keeps showing us that NOTHING is holding him back. I can't wait to see it for myself. 

But because Chance is Chance, his first roll is met with a couple more big deals. Let's talk about them...

He can now, witnessed by Mommy, Daddy and Grandpa and Grandma Reynolds, push up on his arms during tummy time. Weak core? I don't think so. Soon we are going to be watching him crawl like a mad child across the floor, but until then - man i am so proud of him.

And since the doctors keep asking if he's doing it for some reason, he finally decided he would stop keeping everyone waiting and start grabbing at some toys. Now those gyms with the hanging rattles and noisemakers and funny stuffed animals make sense, he's Hell bent on tearing them all down. Finally he's noticed he has hands and he can grab things with them.

Every major milestone met. On time.

What's Spina Bifida?

Mommy loves you Chance <3

Where does the time go?

Well Chancer's is growing up before my very eyes. I love all the new things he is doing, but boy sometimes i think back to those newborn days and get a tear in my eye. He is so big! At 4 months he was 15 pounds 13 ounces (50th %) and 24 inches(10th %)...still my little chunker. He just had his SB clinic, hip x-rays, renal ultrasound, urodynamics and MRI. Hips are in their sockets, only one kidney has hydronephrosis now! Urodynamics was a nightmare, it took way too long to do the tests, he was tired and hungry and they couldn't get the catheter in right so he got irritated. UGH. I don't even know if they got accurate results. I so wanted to have that information too...Little man also got new splints, they are saying he will need AFOs to walk...i'm still holding out that he will be strong enough without them. We might even get some home therapy started soon. He had some constipation issues for a little while, prune juice and water seem to be helping but his rash is getting worse...still trying out new cremes but nothing seems to be doing the trick. He is still up 1-2 times a night, pedi says not to feed him but WOAH would i have an unhappy baby if i tried that. He's my little formula monster!

New things with my sweetheart...

He just started laughing at noises and faces, i love it!

He has started some rice cereal and a couple other solids, still a work in progress

He's very close to sitting on his own, so strong!

Here is a video of the love of my life at 4 months:

My new from the Akin is that i may have hyperthyroidism. My numbers were off the charts so i have to see an endocrinologist. I'm getting my left kidney stone removed on September 29th, it's around 6mms.

DJ was in an accident in Afghanistan and had 3 leg surgeries. He will be coming home next week. Amber and family are finally back in the states, VA.

Here are some new pictures of Chance, God i can't believe how big he is!

 

Love you Chance baby!

Where's the humanity?

Maybe it's because i like to torture myself. Who knows.
I've found quite a few posts created by other moms on Spina Bifida Kids that approach the subject.
Abortion.
Termination.
Insert synonym.
A few of us, yes myself included, have ventured into the depths of the "Termination for Medical Reasons" board. Why do we do this to ourselves? A lot of reasons.
We want to help those who may still be on the fence by providing our stories.
We want to see what the other side of the coin looks like - we could have been there.
We want to know what the other members of the TFMR board thinks of this diagnosis.
I could go on, but even i can't pinpoint what makes me browse this board for Spina Bifida related posts.
But i'm sure i do it for the same reasons that i Google news and articles about Spina Bifida.
The biggest reason is to obtain knowledge. I want to know what could lie ahead for us on the journey.
The other reason, i am ashamed of myself to admit, is to read the comments underneath these articles.
The comments that are written by masked and anonymous members who would never dream of reading their text to your face.
The Internet is the "information highway" and unfortunately, that information can come from any person who knows how to peice a sentence together, even an uneducated and poorly thought out sentence.

But i did it again today. I don't know why. I will never understand myself.
Because when i think i can't lose any more of my faith in humanity. When i think all hope is lost for us. I read something, or hear something, or see something, that makes my hope and my faith sink a little lower.
And here i didn't think i had any left.

When i read comments under Internet articles on Spina Bifida, articles written by sad human beings, i am always, always, always disappointed.
Similar to the Termination boards on Babycenter, i read how our kids are a burden, and we show we love them more by putting them out of their misery.
I hear we are selfish parents for putting them through a poor quality of life and making them suffer through endless surgeries.
I read how this world is full of too many human beings, and those that are "broken" should not poison and contaminate this society with their "handicaps" when there are too many people here already.
I could feel my lip curling up in disgust just having to type that last sentence, knowing i was basically copying and pasting a real opinion. Actually written by a fellow human being.

How did we become like this?
Is these comments normal thinking? Or are they random thoughts from sad, sad people?
I hope the latter.
Along with praying to God every night that he continue to bless our family with all the gifts we have been given, I pray to Him, that please, please can He show the world what they are missing.
Show the world God, what Spina Bifida really is.

Spina Bifida is my son, Chance.
It's the beautiful baby boy, sleeping next to me in his boppy with a blue blanket covering his precious body and his chubby cheeks pressed up against the pillow.
It's the baby boy that my entire family can't get their hands on enough.
It's the baby boy who's smile is by far the most gorgeous site i have ever seen, and whose laugh can take me from despair to elation in a split second.
That's what Spina Bifida is.

Now,
I've been nice this entire post. I've tried to be respectful of other's opinions.
But as i've said before, this is my blog, and if you can type your poluted thoughts for all the world to see, i think it's only fair i offer my completely biased, over emotional and uninterrupted  thoughts on what i think of your so called opinions.

So here it is.
To all the people in the world that think they are more worthy of being here because they are more "normal" then my son who has a birth defect.
My son is 100% perfect and made EXACTLY the way he was supposed to be.
He is not a burden on society or on our lives or ANY of his family's lives for that matter.
He will have a FANTASTIC quality of life because i will see to it, if it's the last thing i do, that he is the happiest, most loved little boy on the face of the planet.
Each surgery he has been through, and will have to go through inevitably in the future, make him 100 times the person you are.
And lastly, if i were to EVER meet you in person, and you were to tell me that YOUR child who is healthy and "unbroken" is better then MY son, if you were to tell me that children like mine will not contribute to society as much as YOUR kid, that our kids' healthcare costs too much to make their lives WORTH the life of YOUR KID and that we should have just "called it quits" when we found out about their condition, i will make it my personal mission in my life, to make yours a living Hell, for their is no greater rage in this world, then the rage of a mother who has been told by some low life, pathetic, ignorant peice of trash that their child is not meant to be here.

So for all of you that feel that way about babies and children and teenagers and adults and the elderly.
Go jump off a cliff.

And that's the end of my rant.

Oh wait, let me present to you the love of my life.
If you think this child doesn't deserve to be here, you don't deserve to be in the same room as him.

Splints!

So Chancers is 3 1/2 months old! Where does the time go? I look at him now and try to picture how he looked the very first time he was shown to me in the operating room. The first time i got to kiss that little cheek. Nothing will ever compare.

He was fitted for his splints and if i do say so myself he makes splints look ADORABLE. These will help stretch his ankles so he is able to point them past neutral. Something called "plantar flexion". His ankles already look better, i wish i had before and after pictures to compare.

I contacted his urologist and based on the cathing log i brought in, we are to continue cathing twice a day until his next Spina Bifida clinic in September.

He is smiling and sometimes even laughing! He loves to talk to himself and he has gotten great at focusing on objects and people. He moves his little legs like CRAZY not to mention his little toes too! We feel so blessed that he seems to have function everywhere. His head control is awesome, very close to perfect - although sometimes he does look like a cute baby bobblehead :) He is so crazy smart, i am truly lucky to be that boy's momma.

Some new things about Chance -

We figured out he is going to be a TV watcher like his parents. He LOVES cartoons - it really helps the cathing experience go smoother!

He is 13.5 pounds of chunky baby! Up to the 45th percentile. I stopped BF-ing so he is full of formula.

He's gotten to the "pick me up or else" stage and very rarely is happy laying down by himself. But we are more then happy to oblige :)

He wakes up 0-1 times a night now, depending on his mood i guess. Helps Mom and Dad get some sleep though!

I still haven't gotten over my obsession with taking pictures of him, probably never will. I swear that kid is going to be a model because people taking his picture is all he's ever known! And because he's so handsome of course.

So here are my/his latest accomplishments.

Love you Chance! <3

Back and forth we go...

Well on day 9 of life Mr. Chance received his VP Shunt. I was a nervous wreck of course, but Chance was "whatever" about the whole ordeal, coming through like a champ :)

After some disagreement between doctors on whether his scans showed enough "improvement" after the shunt placement, we were FINALLY sent home with our son on day 13!

It's great being at home with Chance. We finally feel like a family and can take care of our son without interference (although helpful) from nurses. We get to see his little personality emerge and it feels so wonderful, we have been waiting for this for too many months...wondering and worrying about what it would be like, what he would be like. We worried for no reason, he couldn't be more perfect if we had hand picked him ourselves.

Of course we have a lot to learn being first time parents. But the learning is beautiful and frustrating at the same time. Some day we will look back at all of our mistakes and laugh at how scared we were.

But here are some things we discovered about our son that we couldn't have while he was in the NICU.



He actually LIKES baths :)

He HATES diaper changes and gets the worst diaper rash!

He likes to snort when he eats :)

Tummy time is more nap time...to our dismay.

His focal point is a ceiling fan and he can pretty much stare forever.

He loves to sit up propped on pillows like a big boy.

His favorite place to sleep is in our bed...like a big boy.

And the list pretty much goes on.

Chance just hit his 2 month birthday. It's been a LONG time since i updated. But the life of a full time working mother is a bit hectic.

Chance is pretty much the light of everyone's lives. His Grandparents Reynolds can't get enough of him. When they visit on the weekends he pretty much has a permanent home in one of their arms. His Grandparents Dutton are basically the same, either when they are rocking him, playing with him or just chilling on the couch...they are so in love. And Aunt Heather of course gets to babysit everday and loves every minute (she just got peed on for the first time today, she was so excited ;-))

But most of all he is the WORLD to his parents. We have been through so much together. Yes, now that i have updated it's been 2 more shunt revisions, 4 surgeries total. But like i said before, everything has been worth it, because this kid couldn't be more perfect in our eyes.

We love you more than life itself Chance <3

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He's here!

It's been a week since Chance arrived and I finally have some good time to update his blog :) It will be long since I haven't updated since before he was born!

April 27th was the C-Section date. It went smoothly for the most part, besides my nerves. Brent sat with me during the actual process of "removing" him. I had an upset stomach and the pressure they put on it to get him out didn't help, but i felt no discomfort other than that. I honestly don't remember the exact moment i knew he was out, i'm pretty sure the doctor said something like "he looks good" but i don't remember. I remember hearing him cry, i started crying too. It was by far the sweetest sound i have ever heard. He was 6 pounds 12 ounces, 19.5 inches long. They let Brent get up and take pictures of him and they let me kiss him real quick before he was whisked off to the NICU. My family saw him and got some pictures on his way there, only Brent went with him. The whole process took less than an hour and I was stitched up and wheeled to recovery. I spent Chance's entire back surgery, which was done at 3 hours old, in the recovery room. My family came in and showed me pictures. He was and is the most beautiful and perfect creature i have ever seen.

Chance's original neurosurgeon was out of town for a death in the family. We had his partner perform the surgery, and all went well. He had enough extra skin over the defect to make the surgery relatively easy. His scar is not too big or jagged looking. Just about a 3 inch zipper looking thing on his lower back.

Chance has not needed a shunt as of yet. His ventricles are "large but stable" according to the doctors. As of today, a week, they have done 3-4 head ultrasounds to keep an eyes on the ventricles, and they measure his head circumference every 3 hours. He originally was retaining too much fluid. He was peeing, but after a renal ultrasound showed their was residual urine left in his bladder, cathing was ordered. He started at every 6 hours, I of course balled the first time they did it. They were getting 25-30 ccs every 6 hours. His puffiness went away after they started this. The last few days they haven't been getting anything from the cath and he has good urine output on his own - so they taught us to cath him and moved the time to every 12 hours. We will need to know how to do it in case he starts retaining urine again when he is at home. I was terrible the first time, but better the second. Brent did perfectly the first time he did it, must be a guy thing :)

So we are at the Ronald McDonald House down the street so we don't have to travel 2 hours round trip to the hospital every day. It's very nice but we are so ready to be home with our son where we all belong. Chance is doing amazing. Besides a diaper rash from pooping so much and the hydrocephalus, he is perfectly healthy. He breastfeeds like a champ! We are still waiting for the results of yesterday's ultrasounds to see if he can go home without a shunt or not.

I am so ready to take him home from the NICU. It's a very emotional place and Chance is so healthy it seems being here is not necessary. They can't take care of him any better than I could at home. Crossing our fingers today we actually get some good news on when he can leave!

Sooo Clooose!

Man i haven't updated in forever. I told myself i wasn't gonna slack and already here i go :)
A lot has happened since my last post at 31 weeks!

First, we saw Dr. Berry, our peri, at 33 weeks. It was a nightmare. Without really knowing it he has kind of become the one person who's opinion really mattered. I felt like he understood us and he was always so funny and informative and really put as at ease during every appointment - until this one. Our son's ventricle's measured at 23mm! 23!! It took a lot to not start balling on the spot. I was banking all my hopes on his ventricles not getting above 20 (our peri said this size is usually when a shunt is required). They weren't just at 20, they were 23! He didn't say A WORD. Now if you have heard from me at all, you know how paranoid i have become of doctors - especially when they stop talking. I was so used to him going, "this is normal, this is what's happening, this is what could happen" - now nothing! He didn't offer any reassurance or tell me what the increase would mean for Chance. He measured Chance's sac, it was still at 3cm. It literally has stayed the same size the entire time (THANK GOD). Anyways, Dr. Berry just kind of mentioned he had to go get the pics saved on a thumb drive for our Neuro appointment and left the room. I couldn't even look at Brent without knowing i was going to break down. By this time the tears were running down my face and Dr. Berry came in, gave me the thumb drive and just kind of left. I spent the whole night at home, laying in bed in the dark, crying my eyes out. I am such a hormonal prego.

Anywho. After this fiasco i just figured Dr. Berry was having a bad day and we were going to talk to the Neuro the next week and everything would be fine. Brent and I and our moms waited for a couple hours in the Neuro's waiting room the next week. We talked to him for about an hour. Guess what? He told us we are able to deliver at St. Davids main in Austin where he has rights to perform surgery on Chance. This means Chance doesn't have to be transported away from me to a different hospital! BEST. NEWS. EVER.
Of course i had an appointment with my OB the next day and had to tell him the news. He acted very flustered and said he didn't know if he had rights to deliver at that hospital and i might need a different OB. He would have the nurse check into it. What do you know? They called a few days later with a new delivery plan: Same OB :) Different hospital where Chance and I can recover together :) Same day of delivery :) Earlier time, now 8:30 instead of 12:30 :) Hooray! I'm not used to things working out but i'm so glad they did.

Back to Dr. Berry for my 35 week appointment. I am still amazed at the complete 180 he did between appointments. I expected the worst, and got the best from him. While we waited FOREVER in the ultrasound room, Chance's ventricles were still pretty much the same, 24mm. Whatever - the neuro told me measurements don't mean anything. They will still check him to see if he needs a shunt, even at 24mm he may not, so i feel a little better about the ventricles now. Dr. Berry came in and was CRAZY, SUPER NICE. It was awesome. It was like the Dr. Berry i met the first day who gave me so much hope :) He said everything was measuring perfectly for 35 weeks. My little boy weight 5 pounds 6 ounces.

Dr. Berry informed us that he has gotten 3 or 4 more mother's referred to him just that week who's babies were diagnosed with Spina Bifida. It's crazy, must be something in the water around here. I know it's mean that it makes me feel better, but it does, knowing there are other moms out there who will understand what we have gone through. Little Chance will have some friends at his clinics who understand him, and that makes me happy :) I hope Dr. Berry gave them the sense of hope he gave me when i first found out.

We toured the hospital yesterday. Got to see the NICU, meet the neonatologist and see Labor/Delivery and the postpartum rooms. Everyone was super nice. My 15 year old sister was informed she would not be allowed in the NICU so that was very disappointing for all of us. But we saw where Chance will be moved to. Brent gets to go with him right away and i get to visit him as soon as i'm physically capable. The NICU is open 24 hours a day and we can visit him whenever we want for however long we want. I hope the nurses don't mind seeing our faces every minute of the day. Visitors are allowed 2 at a time with him. We can hold him once the surgery has healed a little, after a couple days. He gets to wear clothes we bring him after a few days! I can't wait to see my little man all dressed up cute. There was a bunch of other stuff but i can't remember. All in all it was mostly good news and we are so excited the day is almost here.

Anyways, i'm actually writing this with 10 days left on the Calendar until D-Day. I can't wait to post pics of the little guy.