Emily

Emily was born in November of 2004. Before she was born, we knew that Emily was going to have problems. We were told at about 20 weeks gestation that she had a very extreme case of Hydrocephalus and a unknown 'mass' on her right lung. We were advised by our doctors to terminate but we chose not to.

Emily had a very difficult birth - she was a large baby (8 lbs. 10 oz.) and needed help breathing after she was born. Emily spent the first 10 days of her life in the NICU where she was seen by team after team of doctors and specialists. She was diagnosed with PRS and several other conditions before she left the hospital. We were sent home with a list of specialists to contact, an apnea monitor, and a lot of concerns and fears that needed to be addressed.

Life at home was very stressful - Emily was having difficulty eating and putting on weight. Her apnea monitor was going off just about every night. She was hospitalized in January of 2005 for failure to thrive. During that stay, she worked with several Occupational therapists to come up with a way to help Emily eat more efficiently. (She was expending more calories trying to eat than she was taking in!)The doctors wanted to put a G-tube in, but we were able to avoid that. We were sent home after 4 days in the NICU, feeling a little better but still nervous. The following week, Emily had an appointment to see her Craniofacial Team. Her doctor was very concerned about her desaturations during the visits so we were immediately sent to the hospital and re-admitted to the NICU. This stay was a long one! During the 6 weeks we were there the doctors ran every test they could to establish why Emily was having so many problems. The plastic surgery team attempted to do a Jaw Distraction, but Emily's jaw was too small for the hard ware. So she was sent back to the NICU with a broken jaw. The next day she went back to the O. R. to have her trach placed. (The doctors had re-diagnosed her with Laryngalmalasia and thought that the trach would help her with her breathing issues.) After a week's worth of training on trach care, we were finally sent home with our daughter.

A visiting nurse was sent out to the house a few weeks later to check on us and make sure we weren't having any problems. She came for 3 visits and decided that we didn’t need her services.

We returned to the hospital for Emily's Hydrocephalus in April of 2005. Her first shunt was placed in a very routine, but stressful, surgery. Our summer was very uneventful - filled with doctors and specialist's appointments, therapy, and lots of swimming. (Even though we were advised not to take Emily swimming, we took her for the occasional dip in the kiddy pool!)

Emily was scheduled to have her cleft palate repaired in December, but we ended up having to cancel because Emily got very sick. We have spend the last 7 months in and out of the hospital. Emily has had 6 shunt revisions, 3 seizures, a lung surgery to remove the mass from her lung, pneumonia, rotavirus, and a million other things that have kept her going back. (She seems to know when holidays are coming up - we spent Christmas Day, New Year's Eve and Day, Valentine's Day, and Mother's Day all at the hospital!)

Our weeks are very busy - we spend lots of time at therapies! Emily sees a physical therapist, occupational therapist, speech therapist, and has a home teacher. Her specialists and doctors are squeezed in between all of the therapists. Occasionally we have a day of rest but with her being 18 months old, those days are few and far between.

We are FINALLY going to have Emily's palate repair in 2 weeks! We have been waiting and trying to get her healthy. She will still have the trach in place for a while, but hopefully we will have better luck with her speaking after the palate is repaired. (She only 'speaks' 4 words, but she signs about 50 different signs!)

Emily is best thing that has ever happened to us! People are always saying "Oh I am so sorry" or "That's such a shame" when they hear Emily's story. We always tell them that Emily is OURS and no matter what anyone says she is PERFECT to us!