Happy Birthday, Baby A!

Today Aurelia turns two.  Can you believe it?  I certainly cannot fathom that my precious little Kid A is a two year old.  And I have many, many thoughts swirling through my head as I contemplate this little lady.  I could talk about how it seems like just yesterday. . .  I could post the obligatory NICU pictures with all it's wires and tubes.  I could talk about those first few days full of tears of joy, tears of heartache, fears of unknown.  I could talk about the initial prognoses, the grim and hopeful all rolled up together.  I could talk about the tiny little baby who we were uncertain would smile, laugh, see, sing, walk. . .  But I really don't want to talk about those things (even though I kinda just did a little).

I want to talk about the girl who is currently flipping through her favorite periodical, Aviation Week and Space Technology,

The kid that who signs "more" and then wiggles her shoulders signifying music first thing each morning,

Whose favorite songs are Stompy The Bear by Caspar Babypants and If You're Happy and You Know It Stomp Your Feet (she loves to stomp),

Who had to have her cowgirl boots hidden from her because her orthotics don't fit in them,

The kid who would live in the pool,

And will eat a whole tomato for lunch,

And loves to wake up slow and snuggle each morning,

Whose favorite outfit is her rainbow leggings and a patagonia t-shirt (ok, maybe that's more my favorite outfit 'cause she would be happy to wear pjs all day every day and throws a conniption fit when it's time to get dressed each morning),

The kid who loves giving kisses and waving hi and bye,

The little lady who first called me, "Mama,"

And helped heal some of the parts of my heart that were hurting,

Today I celebrate Kid A who is full of joy, smiles, and wiggles.

Prepare to be blown away

Aurelia took her first steps during the Olympic Opening Ceremonies during the Chariots of Fire piece. And she hasn't stopped walking since!

The Worst Ever

Well, I pride myself on being even keeled and well rounded.  I'm good at a lot of things.  There are a few areas in which I excel.  And there are many areas where I lack skills.  But for the most part, I'm pretty good at most things.  However, I think that I can state without a shadow of doubt that I am the WORST blogger ever.  Never in the history of the blogosphere has someone neglected/ignored/mismanaged their blog to the extent I have.  The issue is that while many people just stop blogging and move on with their lives, I maintain that I still blog. . . I still write. . . I'm still here. . . and yet I haven't even signed into my account in over a month.  So, if you're still here, I sincerely apologize.

The worst of it is there has been so so so much to share.  We went to Vancouver, BC.  We travelled to Duke.  We've been utilizing our pool with it's awesome solar heating.  I made salt.  I made butter.  We attempted to make beer (attempted in that it's still brewing).  Life has been full, happy, healthy, and wonderful.  Don't you just love summer?  I feel like something about summer makes me laugh more deeply, smile more widely, and love life fiercely.  Or maybe the neglect of the blog and love of summer could have something to do with the fact Joey's home.  Or our two rapidly growing, rapidly progressing kiddos.  Or all of the above.

Bottom line, I'm back.  And I have some catching up to do.  And I have some sharing to do.  And I have some pictures to post.  And you'll have to wait until tomorrow, or the next day, or definitely the next day.

Forward Progress

And she's off!

Lately

Blog Guilt is much easier to deal with than Mom Guilt.  With Joey gone, my arms are rarely free and my moments are rarely spare.  Things are slowly starting to fall into a routine and hopefully I'll slowly start visiting this little internet space more often.  

But here are a few things in our lives:

Someone is standing!

Someone is smiling!

Someone got to come home for an unplanned, 24 hour visit pre-departure.
PS. My husband is so handsome!


And someone reactivated her IPhone and is actually taking pictures of her kids!

Aurelia and Nono and our new chair.

Get at them beans!

This one is turning into quite the lug.  She's QUICKLY catching up to her sister's size.

Super static bouncing baby. 

Life is full and busy.  But it's also lovely.

Unremarkable

I've been working on a post about Aurelia's MRI results.  Unfortunately, when I finally got around to hitting "Publish" I was greeting with an "error" message.  And poof, all my work and effort was gone.  That's frustrating.  But I didnt really like the post anyways.  I had worked so hard to craft this little synopsis of a very important test in a fun, conversational way.  But sometimes life is just easier laid out nice and plain.  It's hard to be conversational about brain structures.  So, instead I'll just summarize the (mostly good) results.

The Good


- First and greatest, Aurelia HAS a corpus callosum! and a partial septum pellucidum.  This is the part of the brain that connects the right and left.  In her first MRI it was not visible at all.  It's hard to get into all the medical jargon, so we'll just say that this is a great piece of news.

- Her pituitary gland and optic nerve were "unremarkable."  Again, on her first MRI there were pages of notes on these two parts of her brain.  They looked damaged and not complete.  Now, her pituitary gland and optic nerve don't even warrant remark.

- She has loads of fluffy, healthy looking brain tissue.  I remember so vividly being in her last ultrasound and looking at this picture of her brain filled with fluid.  Her perinatologist took a pointer and outlined this barely visible grey line around the perimeter of her brain.  "That's her brain tissue, and it's under a lot of pressure."  Of course, we knew at this point that the brain is like a sponge in that when pressure is released, it will regain some of it's original form.  We didn't know how much tissue would fluff out.  And we're pleased to see that it was a lot!

The Questionable


- These results are preliminary.  Some really smart doctor will go over her MRI slide by slide for more thorough findings.  Although we're not expecting bad news at all, knowing there is more info coming can be a little daunting.  If nothing else, it makes us very impatient to wait.

- She does have some fluid pockets and some ventricle dilation.  It doesn't appear to be putting much pressure on her brain, but it does mean that there is brain tissue that has not fluffed out.

- The back of her brain shows signs of damage with some white and smooth tissue, and incomplete mylanation.  This wasn't huge news for us since we knew that't where her brain bleed was located, and that is the area of her brain that is not receiving as much blood.  It also goes hand in hand with many of her diagnoses (CVI, delayed motor development, etc.).  We also don't know what that means long term.  But we'll hopefully find out more at her neurology follow up.

How we're dealing with this news


We are so thrilled with her MRI results.  Even with the damaged areas and fluid pockets, knowing that much of her brain is unremarkable is a huge relief.  None of this information changes much about her longterm prognosis, her care, or her diagnoses.  But we're happy that there wasn't much to report.  And if there are anymore findings in the full report, I'll fill you all in.

Happy Fog

I suppose it's a given that the adjustment from one kid to two keeps our hands (literally) full.  Life feels foggy right now.  That could be due to lack of sleep.  Or it could be due to having an 18 month old and 1 month old (Happy 1 month Little M!).  It might be due to the fact that Aurelia came down with RSV which quickly became bronchiolitis two weeks ago.  Or it might be that the rest of us, including Marguerite, caught Aurelia's cold in a pretty major way.  Aurelia was all, "Welcome to the world, Sis.  Here's a nice virus for you.  Think that's tough?  I had brain surgery when I was your age!"  And Joey and I have been passing the tissue box and throat lozenges from one bedside table to the other as we pass our sniffles and sore throats back and forth.  I am a little jealous that he gets to take Nyquil, although it hasn't sped up his recovery.  So, yes, foggy is the appropriate descriptor for this season of our life.  It's a happy fog most of the time, full of cuddles and cute kiddos.

Mamaw was in town for the majority of our colds.  I am SO thankful for my mother-in-law.  What a blessing to have her here to help us navigate through this bleary-eyed time!  We didn't have to think about meals or laundry for an entire week.  Baby clothes were organized.  Floors were vacuumed.  Banana pudding was made and consumed.  Coffee was brewed before I rolled out of bed.  It was fantastic, especially on those days when getting out of bed seemed daunting and breathing through my nose was impossible.  But more than having someone to help around the house, I simply love having my mom-in-law around.  Like I said last week, she's one of my favorite people.  I'm thankful that she brews the coffee before I wake up, but I enjoy the conversation while we drink the coffee together most.  And, of course, my kids got their socks loved off with all the kisses and attention.  Aurelia was in heaven!  We were all sad to see her head back home.

Adding to the fog, our schedule has not slowed down.  We postponed and canceled most of our appointments last week when we were sick (and added in three trips to Pediatrics Northwest).  Now we're catching up and making up, including newborn pictures with Jacob Rodenbucher, Little M's one month appointment (53% for weight and the 93% for height), and Kid A's MRI on Friday.  It's a bit of a whirlwind, but I'm glad to get all these appointments done before Joey heads back to work at the end of the month.  I have a feeling the fog will get a little bit thicker when he leaves.  The first time he left after Aurelia was born, I lost my drivers license and checkbook and backed into a parked car all in the same week.  I feel a little more prepared this time and a little less tired.  Hopefully I won't get halfway to MOPS and realize I'm wearing slippers again.  It's all just part of the fog.