Grace

Since the moment I learned I was carrying another little baby, I knew if it were a girl, her name would be Annabelle. Our spontaneous sweetheart arrived 7 weeks early and we still didn't have a middle name! I thought I still had time to decide! 

Tonight while packing the first boxes for our move out of our home, I found the piece of paper I carried around for months, it was the list of middle names I was considering to accompany Annabelle. 

Annabelle:

-Clair

-Jayden

-Reese

-Skye

Day 2 of watching our fighter in the NICU I had one simple thought "this experience together will not define our journey we are beginning sweetheart, it will be the grace of how we move out of this hospital one day and one hour at a time that defines who you are. Grace... grace, yes, that's it. She smirked. And it stuck. 

http://youtu.be/If092sbMsAI

Our Annabelle Grace is absolutely mesmerizing how she moves around this unfair life, but with such grace. I'm glad she named herself, it happened for a reason. 

Last weeks appointment with the surgeon didn't go as well as we had hoped, but it was productive. 

Annabelle's gastritis in her tummy is so active and out of control that it's begun to move and ooze out of her stoma (the hole the gtube is in). There are ulcers that drain, bleed and are spreading around her tummy. I was told by the nurse that if we were to change her tube out then (as planned), the pain would be entirely too much for Belle to withstand and we needed to control the gastritis first. I agreed. I wasn't in a rush to replace the tube with a new one.. Not if it meant an ounce of pain to Annabelle. 

We're using a new medication to help her site heal. We clean it 24/7, it bleeds and drains constantly and requires maintenance around the clock. The medication just isn't working as soon as I hoped :( I've watched it all weekend and it's only getting worse. Everything inside me wants to avoid the surgeons office because I know what they will do, but I also know something isn't right at all with this outbreak. We've changed her acid blocker for her tummy, it's supossed to work better than the last but at this point I'm wondering if it's working at all. Fingers crossed it begins to get much better very very soon!! 

We are in contact with Genetics currently and working on a game plan towards moving further, I will learn more tomorrow and update and explain then. 

Overall, Annabelle is doing well right now. She's so very happy, playing, napping and talking up a storm :) she made me so frustrates the other morning that I had to laugh and looked at her "WHO ARE YOU?!", without missing a beat, she barked back "me! Annabelle! Bishop!" And she kept playing... Oh she's so mine.

she is beginning to look very very pale again and if she runs or moves too quickly, she begins to choke and cough until she is nearly sick (the nissen prevents her from vomiting thank goodness so she never fully vomits!). Her energy just takes a long time to come back after she's been down, although this time it still hasn't returned. She's sick if she moves too much and I don't expect it's going to get better .. Not anytime soon .. .. .. 

 She is starting to get an appetite back and we are offering a few foods that are safe and she is enjoying them again! I am so happy she has an interest in food! She still struggles often to chew/swallow but she is at least interested. 

I am praying it's an easy, slow week for our Annabelle this week. We anticipate a few test results coming in, so our nerves are shot.. The waiting game is the worst. As a family, we're packing things around the house slowing and enjoying more cuddle time and books, puzzles and coloring than ever. We like these slow times. We enjoy the quiet, warm cuddles on the couch way more often than we should. We cherish the ability to all be home as a family. It's "normal", and geez it feels so good to get a taste of normal every once in a while!