Thursday, October 28, 2010

Getting into a routine

Has it really been three weeks since my last update?  It's not for lack of material.  I'm struggling with lack of time.  Like most new parents, I find myself constantly asking, "Where did the day go?"  With Joey back on rotation and gone until December, Aurelia and I are settling into our routine.  Of course, our routine includes frequent trips to Mary Bridge Health Clinic to see all her specialists along with diaper changes, late night feedings, cuddles, and all the other newborn joys.  I am very happy to report that most of her lab work and examinations have come back normal so far!  We are waiting for results from genetics, her endocrine report came back normal, and her neurosurgery follow-up was a breeze.  After our neonatal follow up next Tuesday, we have a bit of a specialist break until her 4 month appointments and her opthamology appointment.  In the meantime, we're enjoying lots of precious moments like these:

Such Sweet Smiles!

Cuddles with Uncle Jeremy

Pumpkin patch with cousins Karis and Jaron

My little 7lb 15oz pumpkin.

As we get used to our day to day routine, I hope to be able to update and post more.  I finally got around to ordering birth announcements, so I'm a little behind in general.  But, as always, it's my goal to be better at letting people know what's going on in the Hawkin's Household.  Right now our two biggest prayer needs are that she would continue to pack on the ounces and that her neonatal follow up will go well (more on the details of that later).  11:15 PM is way too late to be up these days!

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.