and I still feel so broken... I take comfort in knowing that she is in Heaven singing praises to our Lord.. still the selfish mommy that I am, just wants her here and in my arms..one day though, I will see her and hug her and kiss her sweet chubby cheeks and NEVER let her go.. I have been feeling down all day (week) and worse now.. A very sweet lady I've met and talked to has a son named Jace. He is believed to have mito also, (unconfirmed though) they went to a specialist today and had the "keep him comfortable for as long as you can" speech.. I remember this and other than her passing, was the worse day of my life.. please raise this sweet family and precious baby up.. He goes in tomorrow morning to have another kind of feeding tube placed. Hopefully this helps and offers him some relief.
please check out his caring bridge site and leave them some encouraging words...
this is my sweet Ella Bella 6 weeks after she was born... if only there was a time machine to go back to these days and pause..