Wednesday, October 6, 2010

North Carolina Notes: Perspective

Children's hospitals make me a misty eyed, even more so now that I have a child that frequents them. Duke Children's Hospital does a lot of specialized treatments, which means there are a lot of sick kids there. It's amazing what walking these halls can do for my perspective on our current situation.  Although there are a lot of unknowns with hydrocephalus, right now Aurelia is a healthy 6 week old baby.  There is so much of life to enjoy with her.  We have a lot to be thankful for. 

Our time at Duke was simple and straightforward.  We met with a nurse practitioner on Monday to do our intake.  We were in and out of the hospital in about an hour.  Tuesday was a much longer day with a few delays and a few unexpected turns.  We already knew that Aurelia had weak veins since her three IV lines collapsed in the NICU following her shunt placement.  To place the IV for her reinfusion, she received 6 pricks and ended up with an IV on the side of her head (precious little lamb).  She was such a trooper through it all.  And she is so strong!  Everyone was impressed with her kicks and grip.  She continues to make us beam with pride.

That's a birds eye view of our medical team.  They were all amazing.  And yes, that is a guitar in the mix.  The Jim Valvano Day Hospital is for children receiving chemo or other infusions (like Aurelia) and tries to make these procedures as inviting as possible for its patients.  There are playstations, TVs, DVDs, an art therapist and a musical therapist.  Baby Hawk was soothed with lullabies ranging from Rainbow Connection to Baby Beluga.  I think it helped ease the tension in the room as everyone found themselves tapping their feet and singing along. 

A few point of interest:

-Aurelia has really long fingers.  In Washington, people always comment that she should play the piano.  In the land of Coach K, Jimmy V and UNC, people say she'll be a great basketball player.  We've already told her she can go to Duke. 

-We found out that we'll need to come back for another infusion when Aurelia is 6 months, and possibly one more when she is 1 year.  The idea is that as cells mature, more stem cells can help fix more damage. 

-Cord blood looks a little like Kool-Aid.

As I said at the beginning of this post, being at Duke made us realize that we have a lot to be thankful for.  I don't quite know how to word what I'm trying to say.  It's hard to share all the emotion of an experience like this, and even more difficult with the amount of sleep I'm averaging.  When I see other parents of children that have special conditions, my response isn't to compare our situation to theirs.  I suppose part of me wonders how they are coping, what day to day life looks like for them.  Spending time at children's hospitals makes me thankful for my daughter and for her hydrocephalus.  There are times when I'm frustrated that she was born with this, but that's a whole separate post.  But when I see other families walking with their children through various levels of sickness, it makes me realize each day is a blessing no matter what it holds.  It makes me hug her tight and thank God for my amazing, unique, beautiful little lady. 


Levi and Betsy said...

I love your perspective, Julie. You guys are such great parents!

Erika said...

What a beautiful reminder! Thank you for sharing this, love the photos, she looks so at peace.

Jan Leigh said...

We are following your progress and praying for your sweet family. The blog is such a blessing. We love the photos! She is beautiful and so blessed to have you two for parents. You are amazing!

Katie said...

Love to you and Joey and the little one. Katie and I are thinking of you. Aurelia is a cutie.