Wednesday, September 28, 2011

We are in transition (a post-op summary)

 A slideshow update!

Grandpa Grow and baby pumpkin Grace.  This was when she was more sedated, on an epidural, and definitely and sadly in more pain than the following images.
Today at 4 pm.  Off all the machines and wires!  We were just as surprised as you! Less than 48 hours and the process had started to get Grace on her own eating schedule and out into the world.

Her incision bandage.  This morning was excellent.  My little girl was talking and cooing.  Not in pain (meaning pretty medicated).  But she was focusing her eyes on you when you talked.  She wasn't fussy as much.  She loved being held and talked too.  She was ravenously hungry.  They took her epidural out and put her on oral meds.  The hardest part of taking an epidural off a baby?  The tape.  They freaking hate that tape being removed!

It's so nice to get her to sleep ourselves.  Swaddled and happy and sucking away at nothing in particular- she is a pacifier baby if you ever saw one.  Her face changed from a doped out, unfocused, scrunched up pained face to a tranquil, relaxed, and normal Gracie face.  Momma and Daddy made sure through the first 48 hours that the nurses were on top of her pain.  The first night... we weren't and it takes a while for pain meds to catch up. : (

The view from our floor.  That is the sky bridge I saw in labor... just from the other side.  Funny how that is.  I was just saying how glad I am that we are fully on the other side.  I will be glad when we see this monument more and more infrequently.  This was not one of those mole hill into mountain issues.  Kilimanjaro would be a sucker to climb.  Try doing it while struggling with appointments, docs, stress, and worrying you wouldn't get to bring your baby home.  Well ok that would be really weird tour of Kilimanjaro; just be glad you aren't us.  (PS if you are, please email me.  Find support where you need it, and sometimes it's outside that loving familial support network.  Many strangers helped me cope too.)

YAY! I love putting her in her outfits!  It feels... normal.  The transitions of today started this morning when the surgeons surprisingly said, "Ok, she'll be on her way out tomorrow hopefully if her pain is managed."  Wha?!  Awesome/scary!  Even scarier?  Another surgeon this evening giving us the option to go home TONIGHT!  50 hours after her surgery and poof!  Just take her home?  AHHH!  Ok so it'll be 72 hours, but still. She's peeing and pooping normal  meaning all signs are a GO, literally (That pun was for my father-in-law).  Don't you love those crocheting booties from my cousin Amy? 

She's fighting the sleep monster!  Sleepy baby found a new type of binkie she likes and mommy made sure to ask for lots more!  You betcha those nurses and docs drool over how adorable our daughter is.  They got to meet her little personality today because we got her pain under control.  So glad that we can start to burp her, change her, and clothe her.  She missed being swaddled and cuddled comfortably.

Isn't she happy looking!!  She's milk drunk and we are so happy she's doing well.  

Now, I bet you are wondering "what next?"  Good question.  I'll ask the docs tomorrow.  Seriously though, lots of monitoring.  More appointments.  Watching that the incision heals well.  Watching that she gain weight well.  Watching her make funny faces in her sleep.  You know.  Just watching like a hawk.  I suppose we will see doc at least every other week for two months.  Then more quarterly.  Scans for the cancer cells, MRIs to watch the liver and it's size and the metastasizes on it.  Oh and waiting for the full pathology on the tumor and it's genetic make up.

She's not cancer free, because the liver still has a spot.  In fact many spots.  The surgeons noted it when inspecting her innards.  Likely those other spots were too small for the MIBG scan to detect their cells OR they have already matured to become benign.  THIS IS WHY 4S IS SPECIAL.  It doesn't act like other cancers and they certainly don't treat other cancers with a "watch and see" method to see if it will "just go away."  But 4S can.  And it will.  We have faith that even if it didn't, giving her a "whiff of chemo" as my gorgeously brilliant Ped. Hematology Oncologist doc said, she would surely make it to the other side safely.

Now.  Sleep.  Tonight means back to breastfeeding (and daddy bottle feeding).  It could be a long night.  We have learned to be in a state of constant transition.  Adapt.  Reverse.  Change gears.  The constant? Get your butt in bed.  Eat for goodness sake.  Have you hydrated?  So yes, this has been an exercise in multitasking and transition.

I can also thank the stars above that Kris and I were built for each other.  His cracks and divets perfectly fit my own surfaces so that instead of two lonely bricks we are bonded together in union.  He as my down to earth confidant and me as his in the sky inspired phoenix. I can change at the drop of a dime and he can see things that have always been there.  We learn to adapt to more than just doctors.  We grow together, now being so interwined that caring for Grace is more of a dance than a battle.  A partner who can follow step or take lead, that is a true blessing.  Thank you Lord for all the blessings of our family.  There are too many to thank, therefore the only thing to do is pass it on and teach Grace to do the same.

A special thank you to everyone who continues to bless our family with love and prayers and hope.  If you can believe this... it went ideally.  All of it.  My labor and delivery.  Our surgery treatment for Grace.  I have faith your love and God's love will guide us through these trying next few weeks and months of healing and continued stress of doctors and insurance.  We can all breathe a sigh of relief that her tumor is out and that she can grow and gain weight and be a normal baby. 


Mom Brain said...

of course It went Ideally sis... It all went the way it was meant to. That little girl is here to stay, let it be known! I love you all and am so proud you guys are warriors!

Mom Brain said...

:) OF course it went ideally... and I am glad that babies are like little vampires and heal uber quick. They are miracles... We are all miracles, but they are brand new fresh ones! They can do it a lot better! I love you and am So proud of you three warriors!