Her pretty hand

Little Lu has a little hand.  When Lucia was born,  she had a few 'markers' for being 'special'.  I pushed and pushed, as mamas do,  and when she finally arrived, she did so without making a sound.  Her left arm and hand were pressing on her neck, making it difficult for her to breathe, and her hand was not only pressing but it was different.   After the medical staff resuscitated her, they brought my baby girl to my arms, for me to meet for the very first time, face to face.  I remember thinking that she was perfect, beautiful, and a girl!!!, our beautiful baby girl!  With Jason beside me, he was also ecstatic but he was also concerned.  Having been in labor minutes before, and with an epidural to help, I was slightly (HUGELY) out of tune with the whole scenario.  Anyone seeing child birth for the first time knows it's miraculous but also quite scary, even when all is totally perfect and smooth!  He saw that, plus our baby not breathing, he saw her skin tone turn blue before his eyes and he also saw her different little hand.  A tiny little hand, with the three center fingers attached, fused, webbed together.  It didn't bother me in the least or concern me at that moment, not one bit.  A beautiful baby girl, with one little different tiny part, no big deal.  We soon realized that her hand would reveal a lot more about how very 'special' she really was.

Our first specialist appointment after Lucia's diagnosis was with a highly recommended orthopedic surgeon, specializing in hands, Dr. Laurel Benson.  At the time, Lu's left hand was our biggest concern. We knew she would need to get her tiny hand 'fixed' so it could be used to its fullest and so she would look 'normal'!   But shortly after seeing Dr. Benson, other serious medical complications fell upon Lu,  and her hand quickly became the least of our worries.  In fact, we fell in love with her special hand. We call it her pretty hand.  Her right hand is much bigger, with cute chubby fingers, her 'football throwing hand'-(that goes out to my grampa Kirk).  Her left hand is petite, delicate, a tiny scoop, and in our eyes, one of the most precious things we have EVER seen, touched, and held.  But, we know she will use it best if it's fully functional and the time has come.  Next Monday, May 14th, our litte lu will have her big operation for her pretty little hand.   A 6 hour surgery, ugh, to separate her fingers, followed by a 4 week cast.  I'm not looking forward to it, but her fingers are starting to grow a little less than perfect.  It's time.
I'm sad, I'm scared and I'm so in love with my girl named Lu with her tiny pretty hand.  She will be under great care with Dr. Benson and the little bird will be better off.  While under anesthesia, her audiologist will also do an ABR/Auditory Brainstem Response (in depth hearing test), they'll examine some other areas of concern and they will send a skin biopsy to CHOP (children's hospital of Philadelphia) to be analyzed as part of the PKS research program.   Lu's leaving her mark!
So...this week we are seeing quite a few doctors..1 year appt with pediatrician, an EEG to look for any seizure activity, another general surgeon AND we are taking LOTS of baths!  Lucia won't be able to take a bath/swim for 4 weeks!!!!!!!!!! I'm beside myself on that one..so tonight and the rest of the week, I plan to take baths together to the point of being wrinkled prunes. Jason and I also plan to do a lot of hand holding with Lu!
Thank you Mollie Andersen and family, and the O'Donnell family for your donations to PKS Kids! Thank you Caroline Hammond for joining us for a PKS gathering on Sunday, and thank you Elyse, Megan, Laura and Kim for helping prepare for the second annual St. Lucia White Party, which will be held this fall!!!!!
Shaw Richter, you stay strong for your surgery tomorrow! We are sending our thoughts and prayers to you, little warrior!!!
And Little Lu, thank you baby girl for sharing your tiny, pretty hand with us. We love it and you so much!!!