Worth A Thousand Words - The Photo Essay

33 pictures must be worth...a LOT.

She turned 8 months old November 1, so here's 8 months of the photos you (mostly) didn't see.
(Scroll to the bottom for the the current status highlights.)

03.01.12   Happy Birthday, Aida!
Four and a half weeks early -- 7lb 6oz, 19.5" 

03.04.12   Three Days Old - In The NICU

03.08.12   First Family Photo

03.10.12   Sun Bathing Under the "Bili" Lights 

03.19.12   Going Home!

04.--.12   The "Bump"
At birth, this hemangioma on the back of Aida's head was about the size of a boxed chocolate.  In a matter of weeks, it would more than double in size on its way to a "bump" that filled my hand. 

04.22.12   The Magic Bullet
The portable sound machine we could NOT have lived without! 

04.26.12   More of "The Bump" and Also Some Butt

05.01.12   An Education

On our first visit to Cincinnati, we got a LOT of information.  The goal was to find out which of these many branches would be Aida's diagnosis.  In the end, we're still not 100% sure.  

She is "one of a kind."

05.01.12   The First To Go
 The first hemangioma to go.  In hopes of arriving at a diagnosis, this lesion (along with a small one on her ankle) was removed for biopsy.  This would be her first of two surgeries (as of 11.01.12).  This one was preceded by nonstop transfusions the night before.

05.01.12   Her Homemade Hyperbaric Chamber 
If you've seen the movie Zoolander, you know what this is about.  
If you haven't, it's just a cute picture of our baby girl post-surgery. :)

05.13.12   Mother's Day
We were spending every day - even Sunday - at the clinic or hospital getting transfusions.  The situation was pretty desperate at the time.  After talking to our doctor in Cincinnati, a mother of 5 herself, on that Mother's Day, we would expand Aida's treatment with yet another drug in hopes of finding something that would help her.

05.21.12   The Clinic

05.21.12   The Clinic

06.01.12 The Bump & The Other Bump

The mass under her arm, which was fairly small at birth, grew very quickly. It would be part of coming conversations about surgical removal.

06.12.12   Those Legs

07.02.12   The Bump - In All It's Glory

This slightly blurry photo was taken the day that hemangioma, the largest external mass, was surgically removed.

07.02.12   That Other Bump

This photo was taken moments before she was taken back for surgery and just moments after we decided to have this mass removed.  We were only scheduled to have the mass on the head removed but upon arriving, it was decided that there was more risk in leaving this one that there was in removing it.  It was a very intense 5 minute conversation/prayer.  The purple mark is for the surgeon...just in case there was another massive lump on her chest wall that might cause confusion. The purple marking on the back of her head left a stain on my arm where I was holding her that lasted for days.

07.07.12   A Week (Or So) Post Surgery

07.17.12   Lumpy Legs

07.17.12   More Lumpy Legs

08.07.12   A Head That Was Healing

08.15.12   Lumpy Legs Not Getting In Her Way!

************

When I finally decided to share all this, I took photos of many of the external bumps and lumps.  I wish I'd made some of these photos earlier on, but at the time, I wasn't interested in documenting the mess!

09.22.12   Left Arm - Elbow, Upper Arm, Wrist

09.22.12  Belly Button, Big Toe

This girl has what looks like an actual button on her belly! That's a hemangioma in there.  Seriously!

09.22.12  Head & Left Leg

She has several bumps on her head (a little difficult to see here) that look like little a dime got slipped under her skin - slightly raised and round.

The left leg has deep hemangiomas on the inner thigh and below the knee that look like bruises.  They've grown some since this photo, so they are now a little more obvious.

09.22.12   Right Leg

The back of her right thigh is a mess.  I use the word "gnarly" a lot.  It's actually several hemangiomas all jammed together...or on top of each other...or something.  These were much smaller at birth and were the site of a punch biopsy just days after she was born.  The results were misrepresented, or at the very least, misleading, but who's counting.

09.22.12  Left Calf, Right Leg, Right Knee, Right Thigh

(clockwise from top right)

09.22.12  The PICC (peripherally inserted central catheter) line

After various temporary IVs, the PICC line made life MUCH easier when she was just 8 days old, providing a port to draw blood, administer blood products and ultimately chemo. Since she is a growing girl, on November 1, the line was "rewired" (for the second time) to lengthen it so the medicine gets where it needs to go.

09.22.12  The Scars 

THIS is what an amazing surgeon leaves behind.

10.03.12   I've Got To Admit It's Getting Better

Still some messy legs and other ugliness, but this is a MUCH happier, healthier Aida!

10.27.12  The Greatest Little Girl In The World

Here's a recap of where we are today...

*Aida is 8 Months old with TWO teeth!

*She's undergoing chemotherapy once a month which we hope will be done altogether before her first birthday!

*She is still on an immunosuppressant (and the blood pressure & reflux meds that go with it), but off steroids.  No steroids = ridiculously happy baby!

*She has not had required a transfusion of any kind since June 19! That's over half her lifetime ago! :)

*The lesions on the brain & liver are stable or possibly shrinking very slowly.  There is an MRI scheduled at the end of November to check in on the lesions in the bones.

*Some of the lesions on the outside are still growing slightly.  Many of them look different from day to day or even throughout the day...sometimes softer or harder, sometimes more red or purple, etc.

*There has been some improvement to a few of the outside lesions, but none have come close to going away completely.

*It is not clear if or when these will go away at all. It's possible some will and some won't, though we are hopeful.  Going away would most likely mean flattening out, likely leaving behind scarring and/or discoloration.  (Cosmetic issues can be addressed down the road if need be.)

*Currently, there are no plans to surgically remove any more lesions unless they become a developmental concern.

*Aida is otherwise happy, healthy and making our lives wonderful!