Lilliana’s Story

Site created on May 11, 2022

Lilly was born at 25 weeks (gestational age) via emergency C-section on Friday, May 6, 2022.  Her mother, Brooke Edwards, passed away a couple of hours after delivering the baby, due to an aneurysm that led to a major blood vessel rupturing in Brooke's chest.  Having measured three weeks ahead of schedule at most ultrasounds leading up to her birth, Lilly is larger than most 25-week babies in the NICU, but there's still a long, tough road to travel.  This site will serve to document Lilly's 3+ month adventure home from Greenville Memorial Hospital's NICU. 

Newest Update

Journal entry by Cameron Edwards

Lilly received great reports from two different therapists yesterday. 

She had her first physical therapy appointment yesterday morning at Brushy Creek.  That therapist said the following:

Lilly is precious!! We worked on prone positioning, rolling to prone, and sitting. She is tolerating prone positioning for about 2 min at a time while holding her head up. She rolled to prone with just a little help from me. She is also doing well with head control in midline while sitting with help.

In the afternoon, she had a follow up with her EI, and she said the following:

I can see the progress she's making with rolling to her side and trying to imitate rolling onto belly. She did roll from belly to back about 3x today. She held onto rings in hand longer and was looking at them more. She was looking at her hands and bringing hands to midline and clasping them some today. I noticed her amount of vocalizations appear to be increasing as well.

Her next appointments come next Monday, December 19, where she will visit pulmonology in the morning and her pediatrician for her second Synagis dose in the afternoon. 
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