Elizabeth Pinel
Elizabeth was born 1/28/03. Our Dr. told us, after the ultrasound, that we were having our 4th boy! Our girl was our first surprise. The biggest surprise was PRS. My husband discovered the cleft immediately after her birth. Things then went from bad to worse. She was immediately sent to the NICU. For the first few hours Ellie was breathing on her own, but soon tired out. The ENT tried to intubate, but was unable, due to the small jaw. She was trached 9 hours after birth. My husband is a paramedic and we felt pretty confident that we would be able to handle everything at home. We brought Ellie home 17 days after her birth. We were totally unprepared to care for 3 other children and a trached baby that required suctioning every 20 to 30 minutes around the clock. Fortunately our public health nurse is Wonderful!! She referred us to the Medi-Cal program. Through this program we receive 12 hours of night nursing. Our insurance company was awful when we requested respite nursing. They acted as if we were looking for a baby-sitter for a night out. I was just hoping for a shower! Since Ellies birth, she has had quite a few respiratory infections. So far nothing serious. She has decannulated once and we ended up in the ER for a day. 5 different attempts to replace the tube failed. Fortunately she was able to breathe quite well on her own for about 6 hours. Turns out the tube was being put back into a false space in her trachea. A longer peds tube, rather than a neo seems to have solved the dislodging problem. Due to the cleft, Ellie has a G tube. She just hasn't gotten the hang of oral feedings yet She has fairly severe reflux and takes Reglan, Prilosec and Emycin. The meds do help somewhat. We are hoping to avoid having a fundo. She has been using the Passy Muir valve since she was 9 days old. Some days she tolerates it better than others. It depends on how thick her secretions are on that day. We have our first Cranio-facial team appointment this week, so hopefully they will be able to give us an idea of how she is progressing with her jaw and airway development.
Thank you everyone for your inspiring stories. It's nice to know there is a light at the end of the tunnel and it's not an oncoming train!
