Our Unplanned Life

Emily died today at Children’s Hospital of Philadelphia. She was only 5 months, 5 days old. She was very strong, very brave, very smart, and everybody loved her. Her Mommy and Daddy love her very, very much. Tony

Jennifer called me this morning and sadly, Emily isn’t doing well.Jen asked me to post a note to tell everyone they think our sweet little girl may not be with us too much longer.Emily is stating in the 70s. The Dr’s say her PDA was opening again and she has something called Cor pulmonle, which … [Read more…]

Hello, Well Emily is now at the Children’s Hospital. She was moved to the conventional vent yesterday so they could do a EEG (to monitor her brain waves and check for seizure activity). She did well enough for it to get her transported to the other hospital, where she was put back on the oscillator. … [Read more…]

Edited to add:Emily was put on the vent about noon on Sunday. She had been desating into the low 80’s and we feared that it could be damaging her more. Initally they just had her on the conventional vent with her “NO” gas or Nitric Oxcide. We thought that this would stablize her and we … [Read more…]

Hello, Well Emily got transferred to the Si-Pap machine that they were waiting to get in. She hasn’t done that well on it though. She figured out rather quickly how to turn the machine off by holding her breath and is often doing that. Therefore defeating the purpose of the machine. Her stats on the … [Read more…]