Wednesday, December 12, 2012

Changing the world... one kick at a time.

video

Yep - you see right... he is KICKING.  Yes, I know I've posted video of him moving his legs before, but he is KICKING them.  BOTH OF THEM.  Something that he wasn't even doing last month when he saw the Ortho!  What's funny is, the reason I had to open his diaper, is because he really only kicks when he thinks he's about to be naked.  Wonder where he gets that from ... HMMMMMMM?????

Now, I don't know just how much difference this makes medically speaking... but Dryden's PT was definitely excited about it!  If he has the ability to kick he has the ability to stand as far as I've been told, which then leads to walking.  

It seems like such a little thing to be so excited about but OMG - every time he does it he just makes my heart melt.  BJ and I were talking about it the other day - about how we wish we could go back in time and just punch the specialist right in the face.  Now, I know, it isn't the most NICE reaction, but seriously.  Every time he smiles that big ol smile.  Every time he kicks those chunky little legs.  Every time a therapist tells us he is completely exceeding their expectations... it makes us sad for those parents who chose to listen to their advice and abort.  As BJ said, "Look at what we would have missed"!!

Yes, it is hard.  Watching your child go through surgeries and pain that you can't fix is excruciating.  And I can see how someone would have a fleeting thought of, if they had never been born, they would never feel this pain.  But then watching that same child wear the BIGGEST smile not 3 hours later... well now... that is a feeling that cannot be explained.  It overrides every other emotion.

This little boy is changing our lives... changing the WORLD... one kick at time.  I always did say he was my little ninja.  :)

Monday, December 10, 2012

E I E I ... WOAH!!!

So after last week's fiasco with the shunt malfunction/blockage... I must say, we have seen DRASTIC improvement in Dryden!!!  I am certainly going to be paying much closer attention to things in the future.  Dryden showed NO typical symptoms of the shunt malfunctioning.  He was the same happy, sweet baby.  But man, was it holding him back!

We had therapy session today and he was doing things she thought he wouldn't do for the next couple of months given his progress.  His tracking skills shot up tremendously.  He is focusing on everything now.  He is following sounds that he wasn't even interested in before.  Even his stability with trying to sit up is improved.  It is a 100% improvement!!  He has been eating his cereal too, and last night - first time ever - he slept in his bed ALL NIGHT LONG.  He ate at 11:30 and didn't wake up till 8:00 this morning for another bottle!  WOO HOOO!!!!!!

I gotta say, we are SOMMMMEEEEEE happy hearing all of this.  More therapy tomorrow... hopefully they see as much improvement on their end.

Another thing too... this is one TOUGH little dude.  He is just as content as can be, even after the surgery.  He doesn't even seem phased by the incision.  It isn't tender to the touch, he doesn't flinch... it is just amazing to me.  Meanwhile, I get a paper cut and whine like a baby.  Go figure.

One thing is for sure... I could NOT love him any more.  He is SO freaking happy.  All the time!

Just had to share all this, because it has me practically singing today.  :)

Tuesday, December 4, 2012

Mom knows best... Candy Cane Christmas

So it's true.  Everyone said "You'll know" when something just isn't right with Dryden.  And, even though I thought I was CRAZY and paranoid, I just knew something wasn't right.  It was the most minor something too... I'm sure I sounded quite nuts trying to explain it to the admit ER pediatrician.

Me:               He shows NO symptoms of a shunt malfunction, but it malfunctioned. 

Doctor:         Is he vomiting?

Me:               No. 

Doctor:         Is he sleeping a lot? 

Me:               ... no... 

Doctor:         Is he unusually cranky?  Appetite ok?

Me:              No... he's fine... eating fine.  

Doctor:        So... what exactly made you bring him in?  

Me:             I can see the veins in his head more than usual... and he just seems to stare off into space this afternoon.  

Doctor:       ... ok... well, mom usually knows best!

So... here we are... waiting for surgery.  And you know what?  No matter how many times I hear that word... it never gets easier!  They keep telling me its "no big deal" its "routine".  Well, I'm sorry for getting a little emotional but you are about to cut my baby's head open... that isn't "no big deal" to ME!



It makes me laugh - you can tell that some of the doctors definitely have no kids... she was trying to calm Dryden down and asked for "one of those things that goes in their mouth" ... yeahhhhhh... I thought everyone know what a pacifier, or binky, or nuk was... I was WRONG!!!!



It seems as though my little buddy is going to have a nice little candy cane on his head for Christmas this year.  :)  That's what we said when he had the surgery the last time... it looked like a candy cane.  Wow... he looks so different now.  :)

I'm trying to joke to keep me from crying.  I really am trying to be strong.  I just feel really helpless.  I can't do anything.  :(  Worst feeling in the world.

I'll go for now.  Fingers crossed everyone.  Thanks for all the love and support.  We all truly appreciate it.

Wednesday, November 28, 2012

Sour Milk & Cookies


It's that time of year again.  Christmas.  I'm posting this a bit early, because I know when it gets closer to Christmas, I may not be composed enough to do so.  

Seems like such a long time ago we announced our little bundle of joy to the world.  


I remember watching everyone read the card saying we were adding another stocking next year and it taking people FOREVER to get it!  Seemed so self explanatory to me!  haha

Things seemed so perfect.  A little unknown, but perfect.  We had a wonderful Christmas.  Everyone was SO happy.  Brad and I were having kids within two months of each other!  Crazy how that worked out!!  


Two days later, our worlds came crashing down.  

December 27, 2011.  The day that will forever be burned into my memory.  

My parents had gone to Arkansas as they do just about every year for Christmas.  I remember getting home, changing my clothes and just settling down to get comfy.  As my phone is always on silent, I didn't hear it ring, but when I picked it up I had two missed calls from Mom and a voicemail message that said to call her as soon as I could, Brad had been in an accident.  I immediately called her back and learned that Brad was in the hospital after a motorcycle accident, but they didn't know how bad it was.  They were getting on a plane as soon as possible and heading home.  They needed me to go to the hospital because they said the doctors needed an immediate family member to sign papers or something.  

I called Rhema, made babysitting arrangements and headed down there, FULLY prepared to give Brad a good smack on the head because I had told him just a few days before that he needed to be careful on his bike and stop riding like a maniac.  I got to Rhema's house and she was gathering her things to come with me.  I told her she didn't need to but she said Dale insisted (thanks for that Dale).  So off we headed.  Joking around the whole way there, talking about the baby, Brad... everything. 

We pulled up, and I walked towards the emergency room doors and noticed there was a crowd of people there from my dad's church.  All I remember is walking up and someone blurting out, "He didn't make it".  Rhema immediately grabbed me and pulled me away from them and wouldn't let me go... but it didn't sink in.  Wait... what just happened?!  I heard them, but I didn't believe it - or my brain didn't accept it.  I can't even begin to describe the next few hours, nor do I want to.  Every time I relive that night its like its happening all over again.  Every emotion, every tear, every little fracture in my heart... all of it.  I have only been to Belle Chasse a handful of times since that night.  And every time I cry.  All I can think about is what was happening in his last moments.  What he was thinking.  If he saw that car coming.  It tears me up inside every single time I drive down there.

But there you have it.  While Christmas time is supposed to be all about love, joy and family... our Christmas will forever be tainted.  Soured.  

I have a beautiful family.  A wonderful boyfriend, beautiful daughter and adorable son.  I am trying SO hard to be happy this Christmas.  I don't let them see me cry.  I don't tell them that every time I see a Christmas tree it feels like someone punched me in the stomach.  I'm supposed to be enjoying our first Christmas with our new little addition... and all I feel like doing is just locking the world away till after its over.  

But I can't.  And I won't.  And one of the biggest reasons is this little guy right here...  



Since last Christmas, our little man was diagnosed with Spina Bifida and Hydrocephalus.  We were told he would never walk, he would be slow, have no quality of life, and were recommended an abortion. He was born, and rushed away, put through two surgeries and then for a month after rushed to the ER just about every weekend.  And yet... that picture sums him up.  Happy.  Through and through.  He is NOT slow... and just last month, we were informed that he should be able to walk with some braces.  He has done nothing but prove all of the doctors wrong.  He has the biggest personality and brightest smile I've ever seen.  He is my reason for being strong this year.  He is the reason that, the urge to hide is overridden by the urge to make his Christmas and his LIFE awesome.  Sure, he probably won't remember this first Christmas... but I will.  That smile has brightened so many lives.

And for BJ... Sometimes you don't even know that hug you just gave me was needed so much.  I don't always know how, but you always come through with a smile and a hug.  You are the best dad I know.  I love you so much.  

Here's to making this the best Christmas ever.  And for many more to come.  

(And I promise, I won't leave you sour milk... )

Monday, October 22, 2012

Spina Bifida Awareness



So, its Spina Bifida Awareness month and I'm hearing and reading all these statistics about Spina Bifida.  It is said that about 1 in every 1000 kids is born with SB.  What's crazy is that about 60% of babies diagnosed in utero are aborted.  SIXTY PERCENT!!!!  That number shocked me when I first heard it.  That's a LOT.  I look at Dryden and I just can't believe that number... but then I think back to when he was first diagnosed.

The specialist painted such a grim picture of what his future would be like.  I honestly left her office that day believing that Dryden would never walk, that he would have major developmental problems and I remember her even telling us that although it was too late to abort in Louisiana, she could give me other nearby states where it was an option.  I was so upset.  I figured if she was giving us this speech, that Dryden was going to have it bad.  I was so overwhelmed!!  I can see now why that number is so high!!

Look at this face!!!  I can't imagine him not being here!!!  WHY are these specialists doing this???  I've heard from so many parents that they had the same experience,  I understand that they need to let you know what the worst case is... but they should also tell you about the other end of things!!

It wasn't until we saw the neurosurgeon that I realized other than some major work ahead ... Dryden was fine!!!

It really isn't fair and I wish something could be done to change that statistic.

I am begging you... pass it along... Spina Bifida awareness needs to be raised!!!  A Spina Bifida diagnosis shouldn't be a death sentence.  Spread the word and lets drop that statistic!!!

You could save someones life.



Sunday, August 12, 2012

Doctors and Surgeons and Therapists, Oh MY!



Well, now here is something I just didn't expect.  I have EMOTIONS!  Yeah... I know... it shocked me too, but its TRUE.  Unfortunately, it just means that every time Dryden cries funny, or looks at me funny, I cry and freak out and think something is wrong.  *sigh*

Those of you moms who have dealt with SB kids, you know exactly what I am talking about.  It's really been more about the VP Shunt than the SB though.  For those of you who don't know... the hospital sends you home with a list of things to look for that will tell you if the shunt is malfunctioning or if there is an infection.  You are supposed to go to the emergency room if you see any of these symptoms.  However, these symptoms include things like, 

1.  Excessive sleep/drowsiness
2.  Crankiness
3.  Spitting up / vomiting
4.  If his soft spot is sunken in or bulging

That isn't all of them... but just wanted to give you an idea.  Now... those of you who have newborns... you will know that seems like an impossible task.  How do you know if your infant is sleeping too much?  And cranky... um... all they know how to do is CRY!  Sheesh!!!  So, the only thing I have heard from everyone as far as advice is, "You'll know if something is wrong.  Mother's instinct."  Well - that makes me feel like total crap in all honesty.  I DON'T KNOW.  I keep thinking EVERYTHING is wrong.  I've called the NICU at least 3 times already.  I called his doctor.  I even brought him to the ER already thinking something was wrong.  The only thing I have learned is my maternal instinct must be off because I don't just know.  

The worst part is that I feel like everyone is going to see me as the girl who cried wolf.  Everyone is going to write me off as the crazy over sensitive mother and when something really is wrong they won't help.  But then I just say, well, it's better to be safe than sorry.  I'd rather know and have peace of mind that he really is ok than not take him in and something have been wrong after all.  

I'm sure I've driven BJ absolutely bonkers by now.  I know I've driven myself nuts for sure.  I'm hoping that I figure this whole thing out soon or I may not have my sanity!!

On another note though... Dryden really is doing well.  The doctors say his wounds are healing nicely.  Another thing to mention is that we were told when we left the hospital that it wasn't looking well as far as him walking because he didn't really seem to be moving his legs.  Well, he is proving them wrong because he IS moving them.  He definitely pulls them up, and he even extends one... not so much the other.  But we start physical therapy this week, and I'm hoping we can change that too. 


Dryden seems to have reddish blonde hair too... we aren't quite sure yet though.  It seems to get lighter by the day.  He looks so much like his daddy man.  I don't know what in the world I had to do with making him.  MAYBE his cute little nose... and if his eyes stay blue.   Other than that... all BJ.  What's funny is that everyone thinks Tina is BJ's too.  They say she looks JUST LIKE HIM.  haha  Um... no!! She looks like ME!  


We are so totally in love with this little dude.  All of us.  And how could you not be with a face like that?! Tina is such a big help with him and just in general.  She makes me so proud.  BJ is such an AWESOME dad too.  I knew he was going to be, but he even surprises me with how much he is involved and the way he is with Dryden.  You would not believe the love they share.  It really melts my heart.  I couldn't have done better in the daddy department.  Or the significant other department for that matter.  He is just amazing all around.  I know I say that a lot... but I really do mean it.  I've been in some crazy relationships ... not all terrible, but not all ideal either.  I've never felt this right about everything before though.  Very happy.  Through all of the crappy situations we have been dealt, through all of the unexpected ... I'm still happy.  That says something.  

I'm pretty excited too... Friday we are going to meet other people / parents who have dealt with SB.  They are having a Spina Bifida Awareness meeting at the Zephyrs game!!  I can't wait!!  Any help I can get in dealing with all of this is more than welcomed!!  

This week starts the long road of therapy and regular appointments for my little man.  Please continue to keep us in your thoughts and send lots of love.  My little ninja still has a ways to go.  




Thursday, August 2, 2012

3....2.....1.....BABY!!!


We have a baby!!!!  Man oh man... talk about an experience.  This is one for the books.  But - I'm getting ahead of myself... there's so much to tell!!  Just warning you - I posted the pictures of his incisions... if you don't want to look... don't scroll down.

Wednesday morning finally rolled around - I swear I didn't think it was ever going to get here!  I woke up (if you can call getting up from not sleeping "waking up") and started getting ready for the big day.  Hair... makeup... yeah - don't judge me!!  :)  BJ slept till the last moment (of course :D).


I'll admit it... I was PETRIFIED.  I kept trying NOT to think about everything... but the two hours it took to get checked in and ready were the most excruciating moments ever.  I was so terrified of going in to surgery - I was shaking.

But the time came - and they rolled me back there!  Seems like only minutes went by and we had a baby boy.  All I could see was BJ's face... and seeing the look of complete terror turn into the look of pure pride was so amazing.  He was so excited when they delivered Dryden!!  12:51 p.m... thats's when my little man made his appearance. I don't remember too much after that - I was a bit groggy from the epidural.

I remember them telling me that I had to stay in recovery until I could bend my knees.  You have NO IDEA how hard I was trying to wiggle my toes and get my knees bent so I could get into my own room.  I wanted to see my baby so bad.  But... then I got to my own room and still couldn't see my man.

BJ kept going into the NICU and taking pictures of him for me.  Every time he left I cried.  I loved the pictures... but I wanted to see him.  I wanted to touch him.  I wanted it to all be real!!  The doctors said that as soon as I could get into a wheelchair I could go see him.  I don't think they took into consideration that he had surgery scheduled for 9:30 the next morning and I was specifically told not to get out of the bed for 24 hours!!  I was so upset - I begged the nurses to talk to the doctors and tell them I was ok.  Every time I saw a nurse that night I asked if I could go see him... they finally came in and said yes at 9:00 a.m. - IF I could get myself in the chair.  I was so determined to see him I didn't care!!

That first time was so amazing.  BJ wheeled me in there and I just couldn't stop staring!  I didn't want to leave.


They wheeled him into surgery... and we waited... and it seemed like FOREVER!!  As soon as they said we could go back in and see him we did.  My poor little dude was so bandaged up it was pitiful!  And then it happened.  BJ took this picture ...


... and as soon as he did the monitors started going off.  I heard a nurse next to me say, "Wake him up Mom" - so I started talking to him... and then we were overrun by nurses.  They moved in like ants ... shaking and poking him... trying to get him to breathe - talk about the most terrifying feeling in the world.  All I could do was stand there and cry while these ladies worked to make everything ok.  All I remember is clinging to BJ sobbing.  Finally I couldn't take it anymore and I told BJ we had to leave.  No one even noticed we walked out.  We got back to the room and he just kept telling me it was ok, that they deal with this all the time and Dryden was fine.  The phone rang.  It was NICU telling us that he was ok... to come back in and see for ourselves.  Everything was fine.  So after gaining our composure for a minute... we did.  We went back to see him... only to have everything happen all over again.  Some tiny part of me wasn't sure he was going to make it through the night.  

Of course he did though.  He is such a little trooper!  I still can't believe all that he went through.  Just to show you what he endured... 

Back is all fixed up!!  :(  Poor baby!!


Shunt surgery a success.


I won't focus on all the negative though.  There were so many sad moments... and so many awesome ones too.  We are home now and things are getting "normal" again.  School is starting next week for Tina, so she is excited!!  She is such a great big sister!! She helps out so much.



The doctors appointments are going to be hard to keep up with though.  SO MANY!!  Physical Therapy, Occupational Therapy, Pediatrician, Surgeon, Urologist... and that is just in the first MONTH.  I'm hoping to find a normal in all of this.  In the meantime we are doing some of our own physical therapy here at home.  Trying to check nerves in his little legs.  The good thing is that he does move his legs.  While it isn't a lot, it does leave hope... hope that he will be able to walk... maybe run... we don't know yet.  

The journey is just beginning... and while it terrifies me to have to go this road, now that I have him here, I wouldn't trade him for the world.  He is so perfect.  Definitely fell in love all over again.  


Friday, July 13, 2012

Waiting Game

Tina is back!!  FINALLY!!!!  


So happy to have her home.  Definitely missed her!!  :)  I must say though, I guess I forgot how hyper she is... and how pregnant I am!!  I can't keep up!!!  I can't wait to see her with her little brother.  She is going to be such a great big sister.    

Baby Shower 7/18/2012
So thankful to everyone for all the stuff we got for the baby shower.  

We got Dryden's room done with everything that we got too!!  Well... what we have of a room!  haha  BJ worked SO hard on getting everything ready.  I wasn't allowed to do too much - but I did get to wash, fold/hang, and put away his clothes in his new armoire!  :)  That definitely made me smile looking at all those cute little things.  

Ready for Dryden!!!!!
It is really hard to believe that we are only 5 days away at this point.  I have so many things I am unsure about - it really is so intimidating and overwhelming.  I have been trying to pack a bag for me and for him for the hospital and so many things have been going through my mind!!!  Things that I never thought about till now.  

1.  We have all these clothes... will he be able to wear them?  Should I pack any of his cute little outfits for the hospital?  

2.  When will we be able to hold him?  

3.  What about sleeping?  He obviously can't sleep on his back... but you aren't supposed to let them sleep any other way - so what are we supposed to do?!  

I know the hospital is probably going to go through all of this with us ... so I probably shouldn't be as worried as I am... but I want to be prepared as much as I can!!!

Lucky for me, there are moms that have done this before and are SO VERY EAGER to help!!  I don't know what I would do without their advice!  Of course it is different for everyone, but what I've found is that; 

1.  No... more than likely, they will have him in a t-shirt if anything at the hospital.  We should be able to bring him home in one of his cute little outfits though... but I won't have to pack too much stuff from here.  

2.  Holding him depends on the surgery and when it happens and everything.  Some people are able to hold their kiddos shortly after surgery and others weren't able to hold their little ones till about 7 days!!  Oh my... SEVEN DAYS... That seems like a LIFETIME!!!  

3.  No, he will definitely be sleeping on his tummy.  No back sleeping.  But as I've heard they have a bunch of monitors and such on them so that there really is no chance of SIDS.  Which is a BIG fear for me!!!  I also have a friend giving me a monitor for the same purpose to use at home.  We have a video monitor set up already too.  

It seems like whatever gets thrown at me, there is a mom out there that has an answer - and the reassurance that everything is going to be just perfect.  As much as that helps... even knowing that we aren't the only ones out there isn't helping me too much in these last days!!  

I know this sounds so selfish and stupid, but I am really almost ... jealous... I guess.  I have SO MANY friends having babies right now and they are all perfectly healthy little bundles of joy that get to snuggle up after they are born, get pictures in all their adorable little outfits and go home a few days later.  I just wish things were different.  I know that once he is born all of that will go right out of the window and the only thing that will matter will be getting him better and taking him home.  

One thing is for sure - I am SO ready to have this little bugger!  He is sitting SO high in my ribs that I just can't get comfy!  I finally decided I need to stop driving - there is just no comfy way to sit in a car properly.  I had to visit a different specialist this week since mine is out of town and she said, "Sometimes it still surprises me how high I have to go to get a good view!" talking about the ultrasound of course.  

Five more days.  

Please keep us in your prayers/thoughts.  We will really be needing it in the next few days. 

Thursday, July 5, 2012

Chunky Lil Monkey!!

ALMOST TIME!!!!!!!!

FINALLY got back from all the appointments today and MAN am I feeling the pressure of everything now!!  Had all the talks about pre-op and went over the c-section and what to expect.  Made sure all the doctors had everything on their schedules.  Whew.  I'm TIREDDDDDD!!!

Here is the latest though... 

1.  Everything is still going as expected.  All in proportion, no new problems!

2.  Dryden will be born on July 18th between 12:00 p.m. and 1:00 p.m.  He will be exactly 3 weeks early. 

3.  Apparently... as the doctor said today, he is CHUNKY!!  She said he has a fat little belly - and at only 35 weeks he is already almost 7 POUNDS!!!  Wow.  



Tina was only 7.6 lbs at birth and she was TWO WEEKS LATE!!  I cannot imagine if I had to go full term with this little buddy!!!  Whew!  He certainly won't be the typical premie baby you are used to seeing!!!  

He was moving around SO MUCH today at the Dr.  They had me on the monitor doing my weekly test and he kept setting off the alarms because it couldn't find his heartbeat.  Every time they would get a clear reading, he would roll over and they would lose it.  And the ultrasound was pretty funny too - trying to get measurements and stuff while he is rolling around like a crazy little thing!!

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On another note - the baby shower is coming up this weekend and I am SUPER excited!!  Thanks to BJ's family we have a crib... but nothing else!  :)  Every time I go somewhere I want to buy him something.  I really have to restrain from actually getting anything.  Do you know how hard that is!?

Really not much else to report right now.  TWO MORE WEEKS!!!  I never thought in a million years I would be here today.  And almost 9 months ago - I'd never have thought the time would go by so fast!  


Waiting for our CHUNKY baby!!  :)  

Friday, June 29, 2012

It's like Christmas - only not so much



Remember that feeling you used to get as a kid when Christmas Eve came around?  You were SO excited, nervous, ready for it to be here, but not ready for it to be over?  Forcing yourself to go to sleep because you knew that if you didn't go to sleep tomorrow would never get here.  That pretty much describes us at the moment. 

We are so ready to meet our baby, but so scared and anxious and worried about what meeting him entails.  We are both so on edge right now - ready to snap at any moment.  Between the anxiety surrounding Dryden's birth - not to mention other things going on in our lives, things are REALLY hard right now.   Neither of us is sleeping... me, mostly because of the normal FUN stuff at the end of pregnancy... heartburn, leg cramps... oh the joys.  But more than that... night is always the time your brain has time to wander... anxiety has time to settle in... and with nothing to stop you from thinking about everything - sleep just doesn't come easy.

For those of you who know what we are going through - I don't need to explain a thing.  You've been there. For those of you who don't know... I don't think I really CAN explain.   Any time someone says anything about it, I have to refrain from getting upset - like them saying something about it will somehow make the situation worse.  Like maybe, just maybe this is all a bad dream and we will wake up and everything will be fine.  Most parents know, reality never really sets in until after the baby is born.  Until then - until you hold your baby for the first time... second time... maybe even bring them home... it just isn't real.  I feel like maybe if I don't actually say the words, everything will be fine.  

I still find it extremely hard when someone asks about Dryden to actually speak the words Spina Bifida or Hydrocephalus.  It hurts.  Those are words you hear when you are flipping through the channels and see a medical show.  Those are words that describe someone else.  Those are NOT words that describe a baby - not YOUR baby.  



As the time ticks by, and the day fast approaches, its much harder to just stay busy and think about other things.  The optimist in me says, "It could always be worse"... and the pessimist screams, "Yeah, well it could always be better too!".   I find myself more and more thinking about Dryden growing up.  Will he be made fun of?  Will he be accepted?  Will I be a good mom to him?  Will I have enough patience?  What if I can't handle this!? And I hate myself for thinking a lot of these things because I know deep down that no matter what, its going to be ok.  

I suppose the good news is that the tests have all been consistent from week to week.  No significant changes in anything.  The nurses and ultrasound tech have become my new best friends.  At least that's how it seems... I sure do see them a lot more than most of my friends.  Everyone has been so nice and helpful.  And being able to see the SAME nurses really helps to relax you when you are in there strapped to a machine and being poked and prodded once a week!!

Still feel so very lucky to have B in my life.  It's amazing how some people really are just meant to be.  It certainly hasn't been the easiest road... but we are learning.  I've never had someone who I could so openly talk to... be best friends with... and have SO MUCH in common.  I don't think a lot of people are lucky enough to say that.  While I know this journey isn't going to be easy, I always know that there is someone  beside me helping me along and sharing my burden.  Dryden is going to have a great father.  



Tina comes back next weekend - and I have never been so excited to get her back!!  I miss my little shorty.  Usually I'm so booked up for the summer everything flies by and it seems like she is back in no time. This summer... since I've pretty much not been able to stay too busy outside the house, I have missed her every second.  She's only been gone for about a month but it seems like YEARS!!!!

So much going on in the next couple of weeks, I may not be able to write much... but I'll try and stay in touch. Thanks for everyone leaving encouraging comments too.  I just figured out how to read them.  :)  Love all of you guys.  


Sunday, June 24, 2012

AHHHHHHHH!!!!!!


frazzledpast participle, past tense of fraz·zle (Verb)

Verb:
  1. Cause to feel completely exhausted; wear out


I remember how frazzled I got in the weeks leading up to Tina's birth... and then how much MORE frazzled I got every day she was late!!  That little stinker waited TWO WEEKS after the due date - and then had to be induced!!

Well, it's setting in again!!  That sheer panic that there are only a few weeks ... days... until the baby will be here - and OMG we aren't ready!!

I must say... I'm pretty easy going most of the time.  But this isn't my first rodeo... I remember all the things that need to be done!!  Car seat ready... crib set up... clothes all washed and put away... house cleaned THOROUGHLY... kitchen stocked... they all seem pretty simple - but they are all things I won't be able to do right after having him!  And to top it all off... with the surgeries and his extended stay in the hospital - I'm sure I won't be home much anyways!!

Let's throw in that in the middle of all of this I still have Tina coming back from her dad's and I have to get her ready for school to start back up.  School shopping, uniforms, registration, schedules... oh my!!! Things are going to get a little crazy in the next couple of weeks.

And have I mentioned I am still working full time - if not overtime trying to make up for missing so much work because of doctor's appointments - which happen so often now I may as well just start renting one of the exam rooms!!  Yep... frazzled is the PERFECT definition of how I feel right now!!



Let me send out a warning now - if I snap at you, I'm sorry.  If for some reason you find me in the fetal position crying in a dark corner... well... its probably just because I missed a spot cleaning the kitchen or there is laundry piled up.  Nothing to see here, move along.



I swear - everything has me on edge right now.  The fact that I'm not able to move around and get things done has me so worked up that I cried for almost an hour this morning.  And for those of you that know me - I am NOT a cryer!!!  Now, of course, I feel really stupid even admitting it - but there you have it.  I cried about laundry.  Never thought I'd say that sentence!!!


*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*~*

NOW THAT I'VE GOTTEN THAT OUT

I finally got to meet my nephew and he is so perfect.  He is just absolutely beautiful.  My brother would definitely be very proud of his little dude.   And holding him made me realize even more ... I really can't wait to meet my little man.  I can't wait to see his little face and kiss his nose.  And although it may not be right away - holding him for the first time is going to be absolutely incredible.

What color hair does he have?  What color eyes will he have?  Is he going to look like mommy or more like daddy?!  I know I'm not alone here - there are so many seemingly meaningless things (given the circumstances) that I am just DYING to know.

Come on little dude!!  Mommy and Daddy want to see you!!!  


Wednesday, June 20, 2012

Celebrations and Sadness

We got to tour the NICU today and meet some of the staff that will be taking care of Dryden.  We went over how things will go from check in to discharge.  We talked about who would be allowed to see the baby, visiting hours, surgery... all of it.

I have to say... we were very impressed by both the staff and the NICU.  

As a quick detour... Congrats are in order!!


Yesterday my nephew was born!!!!  


Brody Kristian Bell
 8 lbs. 11 oz.
  
For those of you who don't know... he's a pretty special baby.  His father, my little brother Brad, died in December... two days after Christmas.  



It's been really hard to deal with, but just knowing Brody was coming kept everyone going.  Unfortunately, I haven't been able to meet him yet, but I really can't wait... 

BACK TO DRYDEN...

We went for our weekly stress test/ultrasound today to check Dryden's progress.  The great news is that nothing has changed.  He is still growing (up to 5 lbs. today!!) right on track.  They are keeping an eye on his left foot... they said they may see some inward turning in it but that since its so slight and so late, there shouldn't be much to worry about.  While trying to get pictures of his feet though - which he NEVER wants to cooperate with - he did leave us this lovely picture... 

Dryden's BUTT 6-20-2012

Now, I know to some people that is like looking at a blob of black and grey... however... the caption is correct - it IS his butt.  He refused to show us his feet - but GLADLY showed us his rear... man our hands are going to be full!! 

The doctor was pretty wishy-washy on delivering him at 37 weeks now.  I still haven't gotten a clear answer on whether or not she is still on board for that.  Which is a little frustrating when trying to schedule maternity leave and school starting for Tina bug and... well everything else!  She just kinda left it as we will see how it goes... not very helpful!!

NOW ABOUT ME... 

Everyone keeps asking how I'm holding up.  And up until today, I can honestly say that I really have been ok.  I've really been trying to be strong through all of this.  I know there isn't anything that can change the situation, and I was determined that being upset about it wouldn't help anything.  

Today that all went out the window.  I think the reality of it all really sunk in and all those feelings came rushing back.  The biggest one being, "It's just not fair."  Please don't misunderstand... I'm not sitting around pouting and saying WHY ME.  It isn't about me.  My heart hurts for HIM.  Knowing that he is going to be born and then rushed into another room and I won't be able to DO anything just hurts.  When they were going through everything at the hospital today I really had to muster up every bit of will power to not break down.  

I have no doubt in my mind that BJ will more than make up for any time I'm not able to spend with him... but that really only makes me feel more helpless right now.  I want to fix him, I want to make everything better... and I won't be able to.  

Sometimes even the strongest people are allowed a few moments of weakness.  And even though I won't let myself in the presence of ... well anyone... I am still going to cry.  It doesn't mean I'm going to wallow in self-pity or pity for Dryden either.  It just means that 99% of the time I will continue to be Wonder woman... but there is that 1% of the time where I just need to be plain old me... no super powers.  



Sunday, June 17, 2012

A Father's Dream - Redefined

Society gives you this little box.  Its all wrapped up in this perfect little pink or blue bow.  The problem is, inside that box is everything that society deems "ideal".  Anything not in that box just isn't really acceptable.   

You can't help but get wrapped up in the hype.  In our case, our little blue box was filled with dirt bikes, football, skateboards, drums and guitars.  Its all we talked about.  BJ is so full of life... and so willing to share that life with everyone - especially kids.  I'll never forget the first time I saw him with kids... the way he interacts with them... it really is ALL about the kids.  I know he wanted so badly to be able to share that with his little boy.  




I remember when the doctor told us originally.  Maybe all we heard were the worst things... maybe she just really wanted to give us the worst possible news and work her way down from there.  I just remember her being so ... cold... about it all.  I remember thinking that it was like she was just talking about a picture on the screen... and maybe to her that's all it was.  Hearing that "he may not be able to walk" and that due to the fluid on his brain, "there will be developmental issues".  Every time BJ would ask, is there any chance it isn't that bad... all I could hear her say is, "It's bad... it's definitely not good".  

I remember looking at BJ, watching him take in the news, and seeing all the dreams he had just disappear in an instant.  I felt like I had failed. Like for some reason it was all my fault.  I couldn't give him the perfect little box with the perfect blue bow that he deserved.  

I've since come to realize that we are not a perfect little box with a perfect blue bow kinda family.  In fact... as far as a "normal" family goes... we are about as FAR from it as you can get!!!

 




Our little box may not be the ideal little box with the perfect little blue bow... but who wants that?!  Instead, our little box is brightly colored, oddly shaped, and the bow probably doesn't match.  In other words... it's perfect for us!!  


For those of you who know BJ... you know that he is about as broken as they come.  All those dreams of football, skateboarding and dirt bikes have certainly taken their toll on his poor body.  Needless to say... his box is busted up, his bow has been ripped to shreds... and he is just perfect.  

Today was father's day.  And I don't think BJ could have been any happier.  Seeing him so exited just makes me so happy to be able to share this little box with him.  



And daddy's dreams... they aren't gone after all.  They've just shifted focus a little.  

I'm such a lucky girl... 


Friday, June 15, 2012

Dryden Jacob Corvers Fund

One of the best parts of living in New Orleans and being a part of the music scene down here is that when the going gets tough - no matter who it's for... everyone pulls together. No questions, they just get the job done. Our friends have put together a huge benefit concert for us at Southport Hall on July 27th. Dryden will most likely still be in the hospital, but I will try my hardest to make it. BJ... well he doesn't get a choice - he's playing guitar that night. :) There will be food, a raffle, and a silent auction - with all proceeds going to a fund to help pay for Dryden's medical costs and care. We have the coolest friends, I swear. Come check out the local music scene that night - as I'm sure the lineup will be pretty killer. Thanks to everyone putting this event on - we really can't thank you enough!! I've put the link in for anyone that wants to donate. Every dollar helps, trust me. No amount is too small when it comes to our little ninja. :) WE LOVE YOU!!!!!!

Little Ninjas

We have joked since we first felt him move that Dryden was our little ninja.  He would kick/punch SO hard that it would literally knock the wind out of me!!  And if I thought it was bad then, now is even crazier!!!  Last night we were laying on the sofa watching TV and he was just going to town.  OMG was it painful, but I have to say... I've come to long for that pain.  When we first found out about everything, one of the first things BJ said to me was I hope he continues to kick the s*** out of you!!  He was right too... just knowing he is moving around so much in there, as painful as it is, is encouraging to the both of us.

Since I posted yesterday, I have heard from so many people reaching out and I must say - it is just amazing. BJ and I are soaking up every bit of information we can but reading things off the internet, as you all know, can be so draining and depressing.  Knowing people who have personally gone through what you are going through is so encouraging and inspiring.  All of the crazy things you really want to know, but are too afraid to ask... seeing pictures of beautiful children who fight so hard and make it look so easy.  Its just awesome.

Here are two blogs I wanted to share... about two amazing little boys and their parents.

The first one is Breighton... I have seen so many pictures of him and I have to say... there isn't ONE where he looks even remotely annoyed, grouchy, or sad.

http://breightonourunwrittenrecipe.blogspot.com/

And then there is Gage.  I've been told that he is the happiest kid in the world... and he looks like it too!!



The world is full of little ninjas... fighting the very same battle!

I've taken so many things for granted with my little Tina bug.  She is such an independent little punk and she always has been.  Even from birth she kinda just said, "Watch out mom, I got this."  She is so laid back and just goes with the flow. She's never really been sick... never had any medical issues... she's just... her!!  There isn't much I have to do for her anymore, she takes care of herself for the most part.  Everyone always tells me that Tina is like a little mommy herself.  Always taking care of the little kids around her.  And I realized... I have the best little helper I could possibly hope for.  

All this time, all I've been thinking about is "my poor baby"... when in reality... Dryden will probably be much stronger than I could ever dream.  My friend told me the other day, "Things may not be normal, but they will be YOUR normal."  And when I talked to Gage's mother... she said, "We just did what we had to do because he was our sweet baby and nothing else mattered."  

I know its going to be tough.  And I know there are going to be days where I am going to break down.  But I have the most awesome man and amazing little girl on my side.  





It still breaks my heart but I find myself thinking a little differently now.  All this time I've been picturing this frail little bandaged up baby when in reality, Dryden will come out fighting... and all those Bruce Lee moves he's doing in there... they are just practice.  

 Our little Ninja's got this. 

Thursday, June 14, 2012


I guess I should start from the beginning... although that seems like a lifetime ago now.  This one is going to be a long one so here goes:

I must admit, I was scared to death.  Neither of us were ready for this - and we certainly weren't planning on having kids any time soon.  I had made up my mind after going through this once already that the next time I had a baby things would be done right. We would be married, have a house, and would have really planned things out.  Yet, here I was, about to break the news that a baby was coming.

Through my sobs he found out.  And all I got was "Baby, it's all going to be ok".  No fear, no hesitation.  That was it.  And since that moment it was settled.  It was all going to be ok.

We didn't break the news right away... Christmas was around the corner and we really wanted it to be special.  We made up cards to give to the family...


And then the word was out.  There was going to be a Baby Corvers!!  Everyone was SO excited.  The first few months flew by... we had our first ultrasound... and everything was perfect.


And so it began!!  The wait to find out what our little bundle would be!!  We started looking at names and trying to decide on something.  Man was that hard!!  We went through the ENTIRE baby name book... but we kept coming back to the two names that weren't even IN the book!!  Dryden Jacob and Lera Grace.  They were just... perfect.

Time passed (very slowly) until we finally were able to make the appointment.  The ultrasound was great, everything was normal!  Instead of finding out the gender at the ultrasound we decided it would be so much more exciting to find out with everyone else, so we waited.  And let me tell you, the week between the ultrasound and the Reveal Party was excruciating!!   I really didn't think we were going to make it, but especially BJ!  He wanted to know SO badly.

The day came and the cake was cut... it was BLUE!!
  

We were having a BOY!!!!!!!  Oh my GOD were we excited!!!  Dryden Jacob Corvers it was!!  I really cannot even describe the feeling at that moment!!!!  I wanted to cry and scream and laugh all at once!!

Than came the 3D ultrasound... and we got to see our little monster's face... he looked JUST LIKE daddy.


After that, the checkups were normal, everything was closing in and coming together.  Until our appointment on May 21st.  That was when we heard the words no parent ever expects... "We think there may be a problem".  My whole body went numb.  We were sitting there joking and laughing one minute, and then ...

The doctor explained that they saw more fluid than usual in one of the Dryden's ventricles in his brain.  He assured us that nothing else looked abnormal and aside from the fluid he was a perfect baby.  He made an appointment with a specialist.  I cried all the way back to work.  How could this be?  What happened? But once again, without fear, and without hesitation, all BJ said was, "It's all going to be ok."  I tried to accept that and decided he was right.  It was ok.  The doctor said so - everything else was perfect.

We headed to the specialist fully confident that everything was fine, and it wasn't going to be an issue.  We did the usual intake stuff... and sat there waiting for the ultrasound.  The tech came in and started the ultrasound.  We watched in complete confusion and silence as measurements were taken.  Then they started entering the data.  We noticed that there were a lot of "abnormals" being checked off and all I remember thinking is, no... he said everything was perfect.  After the doctor finished her ultrasound she started talking.  And that is when we found out.  Everything wasn't perfect.  In fact - everything was just turned upside down.  Dryden didn't only have a little fluid in his brain, he had quite a bit.  And not only that... he had a spinal defect.  She started throwing out words I couldn't pronounce, much less remember... and I just stopped listening.  We just cried.  For the first time, I saw the fear... the hesitation... everything wasn't going to be alright.

I think I cried for days.  I didn't answer my phone... I didn't talk to anyone.  I was so angry.  Of all emotions to feel... anger.  How could this be happening?!  I did EVERYTHING right!!!  But there it was.  BJ and I didn't talk about it.  Neither of us really knew what to say.  Added to the fact that we both had stopped listening at some point, so neither of us could quite remember everything the doctor said.

The week between our appointments was hell.  Trying to get through the day was exhausting.  And every day, I'd get home and after putting Tina to bed, I'd just cry myself to sleep.  And then it came... the confidence that had been missing.  BJ came into the room one night and said, "No matter what, he will be perfect."  And just like that - I was ok.  I knew he was right.  I had him beside me, and we were going to get through this... together.

The appointments come and go now... and we have since learned the problems our little buddy will face.  He has a form of Spina Bifida.  It was a defect that was formed within only 26 days of conception.  Nothing anyone did caused it... we were the 1 in 1000.  The fluid on the brain was Hydrocephalus.  There are tubes that run the spinal fluid (which is created daily in the brain) down the spinal cord and keeps everything lubricated.  One of these was blocked creating a "backup" of the fluid in his brain.

The hardest part for us at this point is just knowing that our little baby will be having surgery within days of his delivery.  The first will be to correct the spinal defect and close the open sac.  The second will be to drain the fluid in his brain and place a valve and a tube inside that will drain into his stomach.  The rest is unknown. We really won't know the rest until he gets here.  And then we will only have an idea.  The true test will come as milestones begin to be achieved and progress is tracked.

One thing we do know though is... its all going to be ok.  No matter what.