Tuesday, August 30, 2011

Message to my husband

I love you, Joey. And I need your love.
I trust you and I trust our love.
And because of our love, I am making a commitment to you for the rest of my life.

I want to be your wife, and I want you to be my husband.
I affirm this commitment to you now before God and our families and and friends (and blog readers).
I promise to support you in who you are and the ways you are growing.

I will be faithful to you and honest with you.
I will be there for you in times of fear, confusion, and difficulty; in joy, growth, and fulfillment
So that our love may continue to grow, and together we may serve God and others,
As long as we both shall live.

(Our wedding vows originally written and read by my parents, Bill and Kathy Pandiani)

We've had many, many adventures since the establishment of Team Hawk 8 years ago.  I am still absolutely floored that I have been so blessed to have Joey Hawkins as my huz.  He claims I've been in love with him since I was 15.  While that's not quite true, I will say that I knew there was something special about him way back then. . . and maybe I had a little crush on him.  He was (is) the really cute, absolutely hilarious, older guy.  I still shake my head when I think how crazy it is that we're married.  Definitely something I wouldn't have predicted when I first met him 14 years ago (whoa, that's almost half my life!).  Definitely something I had a glimmer of hope for on our first date 10 years ago this weekend.  And definitely something that has made me thankful every single day since we said, "I do."

So, to my favorite person in the world: I thank the Lord for giving me the gift of your precious love.  I don't like to think of who I would be without you.  I do like to think of who I've become with you.  Sometimes I think that one of the readings at our wedding should have been "Oh the Places You'll Go" by Dr. Seuss because we've been some amazing places, had some amazing memories, and grown together into an amazing family (exhibit A: Baby A).  Thank you for going places with me.  You're the best thing in my life.  

Here are a smattering of favorite photos in no particular order:
Grand Bazaar, Istanbul
San Diego
El Paso
Juarez/El Paso Border
Ciudad Chihuahau
Babur's Garden, Kabul
Grand Canyon
Epic Sounders Victory

Thursday, August 25, 2011

YEARLY Tune-up

Aurelia and I visited the mechanic, err I mean neurosurgeon, on Monday.  I realized about halfway through the appointment that in a lot of ways seeing the neurosurgeon is a lot like taking our child in for a tune-up.  And I'm not saying this because I don't like our doctor.  Quite the opposite.  He was instrumental in saving my baby's life a year ago.  He is a very skilled doctor and a very nice person, albeit a little quiet and quirky.  But his primary role in our daughter's care at this point is making sure that the little piece of equipment he installed in her brain when she was 24 hours old is still in pristine, working condition.  This is important because shunts have an extremely high failure rate (cue Mama Hawk's soap box speech on why more research needs to be done on hydrocephalus).  I'll save the speech for another time and just quickly say that the shunt has a higher failure rate than any other medically implanted device.  Anyways, back to the mechanic's.

At some doctor's appointments, people tend to feel miffed if they're in and out of there fast.  You know that whole "I feel like a number, or paycheck, or specimen" argument?  But at some appointments, it's nice to just get the reassuring, "Everything looks great!"  The neurosurgeon's office would be one of the those appointments.  We want to avoid phrases like "closer look" or "further testing" or "brain surgery."  I am thrilled to say that Aurelia's tune-up went very well.  She had a cranial ultrasound a few months ago to check on the function of the shunt, and according to the scan her ventricles are not dilated!  Our doctor actually used the word amazing when describing the inside of her brain.

And it really is amazing.  Her little brain is doing so much work, and it's able to work so much harder when the shunt is doing its job.

The other great thing about a good tune-up is that we've now graduated to yearly visits with the neurosurgeon unless otherwise indicated.  It's been drilled into our heads over and over that malfunction can happen at anytime, so we have to stay alert to it.  I told our doctor that I sincerely hope that I don't have to see him until next August, because that would mean Aurelia's shunt would still be doing what it's supposed to do.  In the mean time, I'm breathing a little sigh of relief, checking another appointment off my list, and praying that we get to stay out of that office until August 2012!

Oh, and just for kicks and giggles: I asked our neurosurgeon if there was any indication that the abdominal portion of the shunt could be contributing to Aurelia's absolute loathing of tummy time.  He looked at me like I had said something in a foreign language, laughed and asked, "What's tummy time?"  It's such a huge part of my world right now, I just assume that everyone else is in tune to it too.  I guess brain surgeons who don't have children don't really need to know about it.

Tuesday, August 23, 2011

The Tower of Terror: Aurelia's Birth Day.

You know how people talk about emotional roller coasters?  Last night as I was trying to fall asleep and thinking about the important day coming up today, I couldn't help but think that the term "emotional roller coaster" didn't really do justice to one year ago today.  With a roller coaster, there are lots of ups and downs and loops and thrills.  There are moments where you stomach drops, where you wait in eager anticipation for the next plunge, where you open your mouth to scream and nothing comes out.  And there's that great moment at the end where you get off the ride, knees knocking, silly smile splashed across your ashen face, and you go look at that picture at the screen with a grainy photo of eyes wide with terror (or if you're savvy, flashing a smile, peace sign, shaka, whatever you fancy).  While a lot of this applies to one year ago today (thrills, screams, peaks, plunges, smiles, happy/silly photos), there is one key element that roller coasters have that our experience didn't: forward motion.  So, as I contemplated our roller coaster ride on 8/23/2010, I realized that a more appropriate ride for us would be The Tower of Terror.

If you haven't been on this ride at Disneyland or DisneyWorld, it's one of those free fall drop rides.  Except, you don't free fall straight down.  You drop, and then stop, then go up again and then stop, and then drop a little more, and then stop, and so on.  All the while, you're waiting.  Waiting in between the ups and downs, waiting to see which way you'll go, waiting for this big final drop into the abyss of the tower.  And before you board the ride, you wait in line listening to the people before you scream.  It's an experience in exhilaration, anticipation, and expectation, complete with grainy photo at the end.  I should mention that my experience on the Tower of Terror was with my mother-in-law on her 50th birthday, what a way to celebrate!

One year ago today, I woke up in the morning ready to have a baby:

Cue anticipation, excitement, anxiety, but mostly joy.
After weeks of deliberating, discussing, and delaying today was the big day.  My c-section was on the books.  There was just one little appointment to get out of the way.  My longtime readers may remember the discussion on lung development versus early delivery/shunt placement.  They scheduled an amniocentesis just to make sure those little lungs were developed, although we had been reassured continually that it was just one more safety net.  So, we did what Team Hawk does best while we waited for our 10:00 appointment and 4:00 delivery, we enjoyed being together our last morning as a team of 2.  We went to coffee (which was on the house when the barista asked me when I was due and I said, "We're on our way right now!), we enjoyed a leisurely morning in the sunshine, we even had a lunch date planned with my newlywed cousin and her husband between the amnio and check-in (although I would be fasting at that point).  The first little dip on our thrill ride was the amnio.  I know my sisters-in-law are squeamish and read this blog, so I'll just leave it at large needle to the belly.  It was uncomfortable.  And then we waited.  An hour later we had a major plunge as we pulled in for lunch and got the call saying Baby Hawk's test results came back negative and her lungs weren't developed.  "We'll try again next week," they said.  Talk about crestfallen.  We had our bag all packed in the car and everything.  We were prepared.  And all the while I know that the pressure in her head is building and building.  And so we instead prepared to wait longer.

I love this picture.  It's me and my 10 day old nephew, Padraig.  Swimming through my mind at this exact moment was the thought that I was supposed to be holding my baby that day, but now it looked like I would have to wait.
I ate a bite of enchilada at lunch in protest to the fact that I was no longer having my baby that day.  My ob called to say he was sorry about the news, and that I needed to come in right away to do all kinds of tests in case I went into labor in the next week.  At his office, he went over the full report of the amnio with us.  He said, "Well, it says her lungs are transitional, which means they are either fully developed now, or will be in the next 48 hours.  Let's go ahead and schedule your c-section for Wednesday."  After a quick phone call to the surgery scheduling office, he turned and said, "Well, let's just do it today.  What's the point in waiting two more days?  GO TO THE HOSPITAL!"  We're having a baby today. . . again. . . we think.  When we got to the hospital, there was very little time to process anything at this point, everything was in motion.  Although it still felt like such a wait.  Waiting to get my IV placed (so many pokes), waiting for the OR to be ready, waiting for results, waiting for our baby.  And al the while wondering about that big plunge coming at the end, wondering what she'll look like, wondering how she'll handle this world, wondering what's going on in that little head of hers.  At one point I was told that my blood pressure was dangerously high and that it's a good thing we were delivering now because I would have been in the ER soon otherwise.  Suddenly the pace picked up, we're in the OR, getting the epidural, getting prepped, meeting the nurses and doctors who would care for our baby, and then I went under the knife.  And I revisited that enchilada bite (kudos to my amazing anesthesiologist who helped me through vomiting mid surgery).  And I waited to hear my baby cry.  I kept thinking it should have happened by now.  This was the longest wait, the moment before the big plunge.  The doctor said, "1, 2, 3," which I later found out was the number of times her cord was around her neck, and moments that felt like minutes later I heard the most beautiful, strong, fully-lung-developed cry.  She needed a little help to get going.  Joey told me she was perfect, that she was beautiful.  They paused as they wheeled her to the NICU so I could see her, and this is what I saw staring back at me:

Those beautiful, serious eyes.  It was love at first sight.
Then began the actual longest wait.  We waited while they sewed me up.  We waited for my blood pressure to stabilize, which it didn't.  We waited to hear about our daughter's condition.  We had no idea what was in store for this little one.  We really didn't know what was going on with me either.  So many ups and downs, but no forward movement.  When they made the call to put me in the Perinatal Special Care Unit, Joey went to be give updates to all Baby Hawk's waiting fans and to be with our daughter.  And can I just say how I am so amazed by my husband's strength during all this?  His wife and daughter were both in intensive care, and he was so brave for all of us.  The next day we'd both be in surgery at the same time, and again he handled it so well.  When they wheeled my stretcher down the hall from recovery to my special room, they stopped by the NICU and we got our first family photo:

We named her Aurelia Kathleen Joy.  Aurelia means golden and was found on my family tree.  Kathleen was my mother's name, it means pure.  And Joy is from Joey's side, and is so fitting to our baby who is such a joy to have in our lives.

The ride is far from over, and the days following her birth had some of the biggest ups and downs we've experienced so far.  And there will be many more ups and downs to come.  But we feel like we're finally out of the Tower and moving forward with another little person along for the journey.

Happy 1st Birthday to my special little girl!  You came into the world like a thrill ride, and we've loved every second of it (even the plunges).

Monday, August 22, 2011

The Baby Jamboree

There is something so refreshing and encouraging about spending time with people who know where we're at (because they've been there) and know what we're going through (because they're going through it too).  Although Joey and I have always felt supported and loved by our community of friends and family, there is still something unique about shared experience.  It's hard feeling like we always have to explain things.  Sometimes I feel like a poorly written medical textbook trying to give definitions of diagnoses and reports on doctors visits in understandable English (I don't expect you all to be reading up on Aurelia's medical manual).  Last weekend, Baby A and I had a chance to feel "normal" by attending the Baby Jamboree at the Washington State School for the Blind in Vancouver.  It was basically like going to summer camp for visually impaired babies.  And we had a GREAT time!

Just a quick course in some terminology:  

-Visually Impaired or VI.  This is the umbrella term for any person with a vision loss that cannot be corrected and is significant enough to require additional support and reduce capabilities.  Underneath this umbrella you'll find total blindness, legal blindness, low vision and partially sighted.  Aurelia falls into the low vision or partially sighted category.  

-CVI  or Cortical Visual Impairment.  This is Aurelia's visual diagnosis, I've talked about it here and here.  CVI is a problem with how the brain processes vision rather than a problem with the actual eyes or optic nerves.  People with CVI have some sort of brain damage and often have other disabilities or delays.

-TVI  or Teacher of the Visually Impaired.  This was a new one to me.  I always called our TVI our vision therapist, but apparently they are two very different things.  A TVI is an educator that is specifically trained to teach blind or VI children.  

-Early Intervention is the name of the national program that provides support for kids birth to three that have developmental disabilities or delays.  All of our IFSPs and therapies come through our early intervention involvement.  

Man, our life has a lot of acronyms: CVI, TVI, VI, FRC, IFSP, PT, you get the picture.

Ok, back to our weekend at the Baby Jamboree.  
There were workshops on early literacy, healthy development, specific diagnosis, and even one on toys.  There was a panel of adults who are blind or visually impaired and parents of older children who are blind or visually impaired.  It was a weekend full of information, resources, and a whole lot of support.  How great to have a room full of specialist at our fingertips, all ready and willing to answer questions and give ideas.  And did I mention that childcare was provided for all of it?  So I was actually able to pay attention, eat meals with two hands, and have uninterrupted conversations (all of which revolved around Baby A, of course).  There were so many happy and willing arms wanting to hold my baby.

We stayed in cottages on the campus, grouped together with families that had similar diagnoses.  All of the babies in our cottage had CVI, and it was wonderful to compare notes, ideas, challenges, doctors, fears, hopes, goals, on and on.  All of our children are very different with very different challenges and strengths.  But we found commonality in CVI and having children with multiple disabilities.  We've all spent a lot of time on Dr. Google.  We've all dealt with the reality of a very unknown future for our children.  We've all had a lot of the same conversations with well meaning observers (two common phrases we've all heard often "She looks so sleepy" and "She seems to see fine").  And just like at summer camp, we exchanged information at the end of the weekend and hope to stay in touch.  A quick shout out to any of you mommas reading this post!  Our time with the other families was by far the biggest highlight of the weekend.

Another highlight for me was the workshop on early literacy.  If you know me at all, you know I love the written word.  I love to read, write, research, and read some more.  And I have to admit, when we found out about Aurelia's eyeballs, I cried when I realized she might not be able to share the joy of a good book with me.  In fact, it's one of the areas I see her struggle the most visually.  She cannot process the images in the board books I try to read her.  The one book she loves is, "I Am a Bunny," although she only likes the back cover with Nicholas in his red overalls and yellow shirt.  The early literacy workshop opened my eyes to a wide, wide world of possibility for Aurelia, regardless of where her vision level may end up.  We were given resources for braille, large print, experience books, story box books, tactile books, and so much more.  And I am so excited to begin introducing my little lady to literacy.

I walked away from the weekend pretty worn out.  There were a lot of late nights, just like at summer camp.  Although instead of chatty campers, we were dealing with fussy babies.  But I also walked away feeling refreshed and excited.  Visual impairment doesn't seem quite so scary or lonely.  Oh, and apparently Aurelia needs an IPad 'cause that's where the cutting edge technology is for CVI treatment.  Her birthday is tomorrow, maybe when she turns two.  

Tuesday, August 9, 2011

Walk Success

I've been stalling on writing this post because I'm supposed to receive our official team picture from the Walk headquarters.

Let me start by saying a HUGE thank you!  Thank you to all of our walkers.  Thank you to our virtual walkers.  Thank you to those who supported us both financially and with well wishes.  I am so happy with Team Hawk, which you are all apart of to some extent.

Our team raised over $3000 with contributors from all over the world.  Not that it's a competition, but we were the 5th ranked team out of 45!  We had over 30 walkers total including 17 at the actual event.  Our whole team walked the full 5K and enjoyed a beautiful day at Magnuson Park in Seattle.

The Seattle Walk was the largest inaugural walk the Hydrocephalus Association has had with over 500 walkers.  The current Seattle Walk total is over $66,000 with more coming in until September 1st.

Again, thank you all for letting me post and push this little agenda of mine.

Fun little fact: We ran into one of Dad's friends from Gig Harbor who was volunteering at the walk.  He said that he had read an article in the News Tribune about a little girl with hydrocephalus and decided to volunteer for the walk.  Well, of course that article was about our little girl and was written by Kristalyn!