Friday, February 17, 2012

16 Months and Surgery #9

Scarlett Grace is 16 months old!  She weighs 21 pounds and is about 29 inches tall.  She has a ton of new teeth, but refuses to let anyone see or feel them; my best guess is that she has about 15 now.  She is still grinding them throughout the day.  She loves to stand up (with help) to bounce and jump.  She can hold herself up on hands and knees and rock back and forth, but is still pretty stationary.  Her favorite toys are paper, feeding syringes and her light-up bongo drums.  Her hair is long enough that it needs to be brushed after baths, and we put in a hair clip for the first time the other day.
 
Cousin Caleb is starting to be a little more fun!

She was not too impressed with the aquarium...

She likes to play with food - just as long as it doesn't have to be swallowed!  She has also commandeered an orange syringe to play with.

Her very last picture with an NG tube - hooray!
Miss Scarlett had her 9th surgery this week to place a gastronomy (g) tube.  This was an easy procedure that, so far, as gone just as planned (a rarity in Scarlett's world!).  The g tube, or Mic-Key button, is a very simple little valve (just like the closures on inflatable toys) that surgeons placed directly into her stomach through her abdomen that allows us to feed her and give medication without needing her to swallow. It is easy and pain-free to replace once the tract is established, much like an ear piercing, and can be hidden under her clothes.  It is held in place with a small water-inflated balloon, and we will be able to manage it all at home.  I am even going to take out the two stabilizing stitches myself this weekend to avoid an extra office visit (with surgeon's approval, instructions and supplies.)
In recovery, still woozy from anesthesia.
We were extra careful about this procedure, since the original gastrointestinal doctors were hesitant due to her past abdominal surgeries.  Her shunt has a long tube that runs from the back of her head, under the skin, down her neck and into her belly, where a long tube is coiled around, ready to stretch out as she grows, and drain CSF from her brain into her abdomen.  This made the placement of the g tube slightly more complicated, since they had to make sure not to interfere with the shunt (because that is the absolute LAST thing we need!).  So, while most kids get g tubes a bit differently, Scarlett's was placed by a surgeon laproscopically to avoid any interference.  The benefit, however, was that she got to go straight to the Mic-Key button, and will be free to bathe, swim and play in just a few days.

Her Valentine gown was a hit!  She wanted out of the crib as much as possible.
Having a much more active child in the hospital was an interesting experience.  Scarlett has not been hospitalized since she was about 9 months old.  Now, she is very aware of all the fun wires and tubes to grab, of the screens and beeps, and of the constant traffic through a shared hospital room.  She was NOT happy to have to lay in bed for most of the day, and was NOT happy to have her blood pressure taken every 4 hours.  This was a trial run before her reconstructive surgery in May, which will require much longer in the hospital and much more restraint.  We did see just how social she is; as we handed her off to the anesthesiologist and surgical nurse, she reached out to them, bounced in their arms and hardly noticed that we didn't walk down the long hall with her.

9 comments:

TheyAre3Together said...

I'm so happy to hear her surgery went well!! She is growing up soo so fast, into a beautiful butterfly! :)Her hair has grown a lot, too, she's adorable :) I haven't commented in a while, but have followed your family's story since before her first surgery, and am always filled with joy to hear that things are going well with Scarlett, and I appreciate the updates. Take care, and love sent to the three of you! <3 <3 <3

Christina said...

Yay! I am so glad everything went well. Her gown looks so cute on her. I also wanted to comment on how much hair she has now. Kaitlyn is one month older than Scarlett and does not have that much hair. What a cutie pie!

Dolly said...

Everytime I look at her, my heart smiles. She (and you and Chris) are such an inspiration. Thank you for letting us share your journey.

MC said...

Yay!!! I was praying for a positive outcome!! So glad to hear that all went well. Hugs from PA!
Oh, and Brandi, she looks so much like you! So cute.

anna said...

oh thank God everything went well! I have been checking your blog waiting to hear for a positive outcome! you have a precious little daughter! And I LOVED her little hospital gown, you are a wonderfully sweet mamma!

happy prayers coming from NH!

Julie said...

She is so cute on the photos! And so grown up! I am glad things are getting better for you guys.

Robin said...

Aw, I'm so happy to hear all went well, and continues to go well for you guys and Little Scarlett. She is one tough cookie! She is also just adorable! I love all of her hair! I think she has passed up Morgan in the hair department! :) Praying for you always!

Jen Isotalo said...

Oh good! I love reading your blog. I get so excited when I get an alert that there's been an update. Greetings from Spokane, WA. Go Scarlett! Praying for her always. :)

sredmon81 said...

OMG she is getting so SO big. Wow.