Tuesday, March 27, 2012


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.

Wednesday, March 14, 2012

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.  

Friday, March 2, 2012

One Hand

My baby likes to be held.  And I love holding her.  But having a little one in my arms most of the day has caused me to relearn life with only one free hand.  It makes everything a little slower, including typing a blog update.  Here are some things that are going on in our lives:

-Marguerite is 2.5 weeks old!  Where does the time go?  She is sweet and precious, but definitely lets us know when she's unhappy.  And she has beautiful red hair!  I hope it stays that way.  And she looks so much like Joey.  It's adorable.

-Aurelia does not know what to do with this new little person in our house.  She has responded with many sensory meltdowns, a few days of ignoring baby, a few days of ignoring mama, a bout of stomach flu, and now bronchiolitis.  Overall, though, I think she's doing really well.  And I'm glad she's not ignoring me anymore.

-March is a busy month for us.  Aurelia has an EEG, an MRI, a GI follow-up, a neurology follow-up, plus all her regular appointments, and a few extra pediatric visits to follow-up on all the bugs she's had these last few weeks.  Marguerite only has one appointment. . . that's such a strange feeling. 

-In many ways, having Marguerite is a whole new ball game for us.  We've already decided she's a genius because she can make eye contact at so young an age.  I'm guessing that's a pretty normal feeling for parents whose first child has special needs.

-Joey's mom gets here today and I am so excited!  I love having my mother-in-law here, not just to help with the kids, but because she's one of my favorites. 

And I think that's about all the one handed typing I can do.  I'd post a picture, but I can't seem to plug the camera in without both hands.  It will be great when this baby fits in a sling or wrap so I can have two hands.  For now I'm loving all these sweet cuddles with my little red-head.