Friday, February 20, 2015

Emotional Roller Coaster


Yesterday was a rough day for me emotion-wise.  I feel like I am back to my roller coaster days of my pregnancy...all the unknowns...all the waiting...I am trying to learn, trying to understand, trying to communicate with doctors...trying not to allow anyone to put Isaiah on the back burner...and I'm surrounded by new terminology and feeling like I'm drowning in it.

(Oh hey, does this post confuse you after Wednesday positive post?  Imagine being Dave! HA)

And just when I think I am starting to understand, I hear new terms and I am back to my mind fogging up and my eyes are consumed by tears.  I should have paid better attention in biology class or something.

I swear, the only difference between now and my pregnancy is that at least I can turn and see this face:

Baby, I don't know what to do.  I don't know if I should continue to patiently wait for the doctors to come up with a plan or if I should say "Hey guys, if everybody agrees that a shunt would help alleviate the fluid in Isaiah's head, WHY isn't this surgery scheduled? Why are we waiting for these ultrasounds? WHY WHY WHY?" 

Yesterday I realized that while we wait for the cd of my ultrasounds to be sent to DuPont, I've had a CD of some of them all along.

Face palm.

They are from CHOP when Isaiah was just 25 weeks in utero, but it's something.  Since it was past post office hours, I went onto the computer, downloaded some software, and exported every one of the ultrasound pictures that involved Isaiah's head onto my computer and emailed them to Dr. B (I don't have Isaiah's neurosurgeon's email).  I mailed them to DuPont this morning as soon as the post office opened.  (I actually really wanted to drive them so that I could hand-deliver them but Isaiah's neurosurgeon isn't going to be at the hospital today.)

It is so hard having to just sit and wait.

I've tried focusing my energy on the wheelchair confusion.

Dealing with insurance and DMEs and wheelchair companies and MORE WAITING.  More reasons that my head feels like it's going to explode.

I feel like I'm never going to figure this out.

I remind myself that I used to feel this way about NG-tubes, oxygen saturations and respiratory rates, splinting arms (truth be told I am still overwhelmed by splinting legs), ordering supplies for Isaiah's C-PAP.....and now I'd say I am confident in dealing with those things (with Isaiah).  I'm not overwhelmed by them anymore and soon enough I won't be overwhelmed by hydrocephalus or wheelchairs.

We can do this.  We can do this.  We can do this.  All of this.  I can learn what I need to learn.  Isaiah will get the help he needs.  I need to be patient and open-minded. (Anyone that knows me knows that the word "patient" wasn't really in my vocabulary until Isaiah was born. ;-) )

Last night, Isaiah wasn't in the mood to go to bed.  Dave had put him down (because I was on the computer trying to get the ultrasounds) and when I came up a half hour later, he was still partying in his crib.  I have never been so happy that Isaiah refused to go to sleep.

I needed his cuddles and giggles.  I needed story time.  I needed him.

I needed him to remind me that I can learn and fight for him because it's all for him.  He's worth it.  All of it and more.


  1. Great post. If you want, I could give you my mom's email address. She has gone through a lot of the same stuff as you're going through. I had hydrocephalus when I was two I think and had a shunt put in. Mom has also dealt with wheelchairs and insurance and all of it. Let me know.

  2. i am sorry it's so much waiting. you WILL figure it out! you can do this!! thinking of you guys all the time, and hoping for a plan that comes swiftly and gives you piece of mind! <3