Monday, September 6, 2010


Yes, this update is late in coming.  But we are in our first few days of being home with a newborn.  Needless to say, we're running on fumes, and loving every second of it.

Thursday morning we were told that the hope was to send us home that afternoon.  There were some things on the MRI that needed review before we got the go ahead and Aurelia needed to pass the car seat test before we could be discharged.

To sum things up, she passed the car seat test.  The MRI results were a little more vague.  The good news is that there was nothing that warranted immediate attention.  The three biggest concerns are that she has two small hemorrhages in her brain, she has damage to her midline structures (i.e. the pituitary gland, the corpus callosum, etc.), and there are parts of her brain that don't appear to be getting enough blood.  What does all this mean?  At this point it's anyone's guess.  None of the findings were too surprising to the neonatologist, but they did add to our list of upcoming appointments.  Here is a short list of the specialists that we will be seeing in the upcoming weeks: endocrinologist, geneticist, developmental pediatrician, neurologist, physical therapist, occupational therapist, speech pathologist, neonatologist, neurosurgeon, and our regular pediatrician.  Yes, Aurelia already has a busier social calendar than I do!  Oh, and we're going to Duke for a clinical research study on hydrocephalus and cord blood infusions in three weeks. . . So did any of that make sense?  We're still figuring it all out ourselves.

But for now, we're just happy to be home.  It's so surreal to have this little person in our lives after years of waiting for her.  We're so proud of our little fighter (currently fighting sleep).

Meeting cousin Padraig for the first time!


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

Ya for Aurelia!!! She is so awesome...I can barely handle it. I am so glad you are all home and living life together as the premium family that you are. Thank you for the update. Good luck on that long list of appointments. It sounds daunting but I know you guys will make it through. I'm so proud of all three of you.

Jenne said...

great update! So glad she's home and you guys are enjoying her company!

Erika said...

Wow. I'm not sure how you can keep track of all of that with just having had a baby! I still can't keep track of hardly anything. You guys amaze me.
Thanks for the update! Cute pic of the cousins.