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


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.