Saturday, April 30, 2011

F.A.Q. The ones I can answer

I get a lot of frequently asked questions/statements about Aurelia.  Some I feel comfortable answering.  Some don't have answers.  Some catch me off guard.  Some make me feel uncomfortable.  Some questions are a little scary.  Some are questions that I've asked myself.  And I really don't mind the questions, even the ones I don't like.  But I do feel a bit like a broken record at times, repeating the same answers over and over again.  I thought I'd address some of these questions in the next couple posts.  Maybe we'll all find some answers.

How long will she have the shunt?
This is the most frequently asked question.  And the answer is simple.  She'll have the shunt forever.  There is currently no cure for hydrocephalus.  Unless one is found in the near future, Aurelia will always need the fluid drained off her brain.  In very rare cases, people have had their shunts removed because their hydrocephalus has become "normal pressure."  There is also an alternative procedure called an endoscopic third ventriculostomy (etv) where a small perforation is made in the ventricle to allow the fluid to bypass the blockage and drain into the normal CSF space (the interpendicular cavity).  I suppose this may be a possibility for Aurelia, but it doesn't appear to be that common and has it's own set of complications.  That's the long, medical answer with the different possibilities.

Where does the fluid drain?
The fluid from Aurelia's brain drains into her abdominal cavity and is reabsorbed by her body.  Here's an illustration:

Aurelia has a VP Shunt, meaning it goes into her abdomen.

Is the shunt working?
The simple answer is yes.  We thank the Lord that our baby girl hasn't had any infection or shunt malfunction.  The big issue or fear with the shunt is that is has a 50% failure rate, meaning there is a 50% chance that it will malfunction at some point.  But I'm a glass half full kind of mom, so there's a 50% chance that it will never malfunction.  She will have to have a revision at some point to add to the tubing in her abdomen.

The Helmet
Why is she wearing a helmet?
I only get this one from people that don't know us and I get it a lot.  Kids love to ask about the helmet.  Adults are curious about it and either just stare or ask.  I've even had people ask me where they can get one 'cause their kid is always bonking his/her head on stuff.  Now that we've put a bird on it, most kids just want to talk about the stickers.  But just in case you've missed the last posts, the helmet is a cranial molding helmet to round out the flat spot on her head.

How long does she wear the helmet each day?
23 hours.  She gets an hour break for a bath and play time.  We get lots of helmet free snuggles during that hour (but only after the bath, 'cause that thing makes Baby A smell funky).

How long will she have the helmet?
Anywhere from 3 to 12 months.  The longest she would have to wear it would be until she's 18 months, but that's unlikely.  Most kids seem to wear them for about 4-5 months.  I'm guessing Aurelia will be in her's a bit longer because her plagiocephaly was pretty severe and she isn't growing much.  But she's so cute in it, I don't really mind.
Yes, she is wearing Patagonia.  Baby Girl's got style and Uncle Zach.

She seems to see really well.
Sometimes she does.  Sometimes, not so much.  The thing with CVI is that her vision is "fine", as in her eyes work properly.  The issue is the way that her brain processes what she sees.  So when that little brain is processing well, she sees great.  When she's tired, working really hard on something else (like tummy time or eating), frustrated, or just having an off day she loses a lot of her vision.  For example, this morning at physical therapy she appeared to have no vision by the end of the hour long session.  After a short nap, she was engaging and looking around again.

Odds and Ends
What do you do in physical therapy?
Yes, it is strange to think of such a little person being able to do much in physical therapy.  Afterall, Aurelia doesn't roll over, sit up, crawl. . . there doesn't seem to be much to work with.  But there is a lot to work on (like rolling over, sitting up, crawling).  Physical therapy looks more or less like play time with some pretty cool toys.  She does tummy time on an exercise ball.  She plays with different visual toys.  She works on tracking.  We practice movements and rolls.  We work on strength and flexibility (she's a very, very stiff baby).  And she swings in a lycra hammock, which is her favorite thing to do.  We do a lot of these therapy things at home too.  When we move in a couple weeks (more on that later), she'll have her own hammock at home and loads of other cool sensory and strengthening toys.

Do you have good insurance?
We see A LOT of doctors, therapists, and specialists.  And all of these come with bills.  Our insurance is good, but no insurance would cover it all.  Aurelia's 10 day NICU stay came with a $135,000 price tag.  That's a staggering number, that's a mortgage, and that's just for NICU care, not for her surgery, my surgery, or any of the subsequent follow ups.  Our insurance covered MOST of that bill.  We also have a complex case manager with our insurance company that calls and checks in on Aurelia once a month.  She's really great and I truly feel like she has Aurelia's best interest in mind, not just the insurance companies interests.  She gets our referrals approved and recommends different care ideas.  It's also nice to know who to call when I have questions about our policy or any bills we receive.  So, yes, I think our insurance is good.

When does Joey get home?
Joey gets home in a week!  He's gone a lot for work.  And yes, it's awful that he is gone a lot.  I miss him more than it's possible to imagine.  Solo parenting is really tough work.  But in the glass half full mentality, I'm so thankful that he has a job that he enjoys.  I'm glad that I'm able to stay home with our baby, take her to appointments, be the main point person on her care team.  I love that when Joey's home, he's home 24/7 for a long stretch of time.  And I'm thankful that I have a loving, supportive husband who makes me feel loved and supported everyday, even when he's away.

How are you?
I guess this is a F.A.Q. that everyone gets, right?  But it deserves an answer too.  I'm fine.  I'm happy.  I'm tired.  I'm averaging about 5 hours of sleep a night.  I have seasonal allergies.  I'm soy and dairy free.  I miss chocolate and cheese.  I'm ecstatic to have Joey home.  I'm looking forward to moving in a couple weeks.  I'm looking forward to Switzerland.  I'm dreaming about many more trips to many different places.  I'm wondering what in the world I'm doing with my life.  I'm attending conferences on differently developing children.  I'm using words like differently developing.  I'm Mama Hawk (that's still new to me).  I'm ready for bed.  And that's how I am doing at this moment.


Anna, also known by some as Nong said...

Thank you for these F.A.Q.'s Ju. Information is important, especially when things with Baby Girl do change. I am so happy you are getting your man back, and I can't WAIT to hear about your trip to Switzerland! I love you three so much. You are a phenomenal Mama Hawk.

Alicia said...

Thanks for answering these! It is amazing what some people will ask - it must be that they don't know what else to say, or just feel way to comfortable with you. It seems like you have a really good grasp on what is going on right now and that is so important. She is just such a beauty and looks like she brings much joy to your lives. I hope we get to meet her someday.

With love,

Jacob and Carlee Loya said...

yes, thank you for this information. thank you for, as always, being so honest & transparent. and thank you for indulging those of us who aren't interested in "it's none of my business" in our friendship. love you.

Dawn said...

I love you, Julie! Thanks for sharing from your are an amazing person and mama! Give A & J a hug from us. ;)