She has passed.

Gracie Belle finally stopped fighting and is now sleeping in peace.  Shortly after we celebrated her birthday yesterday (1 full day old), Gracie began to have episodes of difficult breathing that continued until she passed early this morning.  We were told that her heart would steadily falter as the ductus arteriosus closed, but we were not prepared for the number of times we thought we lost her.  In many of the early episodes, Gracie's head would turn blue (to me it looked more like purple) and stop breathing for about a minute or so.  She was connected to a pulse oximeter, so we frequently checked the monitor for heart rate and saturation.  Gracie's heart rate typically fluctuated between 130 and 160 when she was stable, with the saturation between 80 and 100.  During the episodes, we'd typically see the numbers decline rapidly until no readings were showing.  Then we would wait.  Without fail, Gracie would surprise us with what initially sounded like a loud hiccup, followed by a few gasps until she would sort of stabilize with labored breaths.  This process continued for 10+ hours.  She certainly lived up to her reputation as a fighter, but it was terribly traumatic for her parents.  As time passed, Gracie's "stable" numbers would decrease and her breathing became more labored.  She stopped turning blue as the night became later, and her face was more at peace.  We think some of the pain medication was helpful.  The episodes were less jolting, but continued the same pattern, until she finally didn't come back. 

As you can probably notice, this is not Emma, but instead you all are stuck with me today, Kendall.  I apologize to those I did not communicate with previously about our little girl.  At first, I just didn't know what to say or expect, and then I think I was paralyzed with inertia.  Finding the right moment to discuss Gracie with friends was very difficult and my sympathy weight, while significant, was not noticeable enough to give anything away.  

This whole experience has been difficult to process.  We haven't posted pictures here yet (mostly because Emma is the most tech savvy), but Gracie was not your average Full Trisomy 9 baby.  I still suspect she was mosaic, but she just looked beautiful to us.  The spina bifida lesion was very large on her lower back and her legs grew the wrong way (folded forward into her chest), but her face was all we could hope for in a beautiful little girl.  Gracie never fully opened her eyes, but we got a few treasured glances of her baby blues.  We just couldn't find a way to fix her heart.

We're working out the details for funeral arrangements, and will provide updates as soon as possible.  Thanks to so many for prayers and support.  The doctors and nurses at Flower Mound Presby were amazing.  They were/are more accomodating than we could have imagined.  We've certainly witnessed many tender mercies from God during this difficult time.  We love you all.

Kendall