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Wednesday, April 20, 2011

Planning once again fails...

Per usual, my attempts at planning have once again failed.  Only this time it is for the best.  Avery's MRI this morning showed an increase in fluid in her ventricles.  That means she will have brain surgery tomorrow afternoon. I was really doubtful that this would happen and had just planned on getting discharged and coming in next week to start over.  However, her head had other ideas!  This is great for me as I will be here for the surgery rather than at home.  Sucks for Nana though as she flew all the way out to see the Big Apple with her Tinkerbelle and instead spent the entire time in the hospital.  Gives us a reason to come back I guess. 

Since the Neurosurgeon was on the same train with me, she was not slotted for a surgery time until today.  This means she is an add on to the schedule tomorrow and will go last.  NPO for the entire day is what we are looking at.  Not that she hasn't done it before.  I have asked for her to be able to eat some breakfast, even if that means getting her up at 5 am to do so.  We'll see what they say.  The surgery will be done by Dr Greenfield and his colleague, which means she gets 2 surgeons for this surgery.  As much as we like to collect Neurosurgeons, we have not actually ever had 2 operate on her at the same time.  This is a big deal.  While not the same as the tumor resection, this is definitely a scary operation for her to have.  She is once again going to amaze us all I'm sure, but it makes me nervous that she is going to wake up with a blank stare like she did the first time.  It tooks months to regain whatever it was that she had been before that and with our future uncertain, we don't have the time to wait for that to come back.  Don't get me wrong, she is going to be fine.  A surgery is not the end for someone who has put in this much blood, sweat and tears, but it makes me nervous nonetheless. 

Today we met Abigail Breslin -- the voice of Pricilla on the new movie Rango and we also watched the movie here at the hospital (its only in theaters now).  That was way cool and Avery really liked her.  Yesterday we found out that video from the Easter Bunny visit was shown on the local news....and of course Avery was on it.  So yesterday she became a star and today she met one.  Overall, a much more hooked up entertainment segment in this hospital than any of the others.  New York has the convenience of Movie Stars I guess. 

Avery's eyelashes have made their debut.  Another week and she will have them back.  Hair and eyebrows are starting, but definitely not as far along in the growth process as the eyelashes.  This is very exciting for us.  Soon we'll have a blonde buzz cut - just in time for summer again!  Her face is starting to fill out I have noticed, although her wait remains just under 23 lbs. The food in this hospital is terrible and the only thing she will eat is a dinner roll dipped in peanut butter.  Some care packages have arrived and we now have a much better selection for snacking!  Thank you to all that have sent or are sending things.  This will help tremendously over the next 2 months as this city is expensive!!  Avery has really figured out how to work the parents and nana now.  She gets mad at me and reaches for Nana.  Seriously kid?  Rules are never going to be established at this rate!

All in all, a quiet day for us here.  We played a lot and mingled with other kids.  We even took a sponge bath, which was much needed after a week of not bathing.  I will update as soon as the surgery is done tomorrow night, but it will most likely be late in the evening.  Please pray extra tonight for smooth sailing through the Ventricleoscopy and steady hands for the surgeons.  I'm not sure this type of procedure is as easy as Dr McDreamy makes it look on Grey's. 



  1. This Grandma wants to send hugs and prayers for Avery, Jeremy, and Jenn. Thanks for letting us be a part of this Journey as we all want our prayers to be answered. Avery you are already a Star. Love to you all.

  2. Jenn, your blogs are amazing! Such a sense of humor with all you are going through. Hugs to you and Little Avery. I am heading back to Minden, Iowa tomorrow for Easter so will be watching for your next posts. Tripling up on the prayers!