After the hospitalization at CMC the second time, Kylie did not have to return to the hopital at all during the remainder of her first year.  She came off of her supplemental oxygen in October 2004.  This was such a great feeling.  It was really hard for us to get any sleep during the time she was on oxygen because it was just so scary.  I felt like we watched her sleep making sure the cannulas stayed in her nose and everything.  We did not have home health care nurses because our insurance would not pay for them.  But, we were just so glad to have Kylie home with us and all of us sleeping under the same roof it.....didn't even matter.  Kylie did and still does get therapy at the house.  She learned to sit up and play very well at eight months.  This was such a huge milestone because Kylie had an abnormal brain scan showing atrophy in her white matter of her brain according to one of her MRI's.  The doctors were always cautious about this and said if she meets the milestone of sitting up she will probably be able to walk.  So this was a HUGE day!!! We always knew Kylie would walk and just listened to them with good manners.  Kylie eventually came off of continuous feeds January 2005.  She was still having a very hard time with reflux and would spit up quite often.  She did not take anything by mouth.  Occupational Therapist and Speech Therapist tried to work with her on feeding.  She had therapist coming into the house four times per week.  She worked so hard during this time and caught up enough with her gross motor issues to be dismissed from the Physical therapist in April 2005.  Kylie began walking at 15 months.  Of course, we went to show the doctor that stated she might not walk and showed him that she could walk!!! YEAH! Kylie's continued to have feeding aversions and we finally took her to have a feeding evaluation.  We were just really hoping that she would qualify for this program and that they would feel like she was old enough to benefit from the program.  This particular program was run by a psychologist.  At 18 months Kylie had the evaluation.  She was having oral aversions and most at this point were behavioral as far as feeding goes.  Kylie had developed a feeding aversion due to some of the medical intervention that had to be done to keep her alive the first four months of her life.  Kylie was accepted to the feeding program and later we would find out that she would be able to go October 2005.  This was really hard to let her go to this inpatient feeding program because that meant she would have to be re-hospitalized and stay there until she was successfully eating and drinking.  This would mean she would be weaned from G-tube feedings.  Three children attend this at a time.  It was hard taking her that day because we knew and she didn't that she wouldn't be home for a while.  Kylie soared through this program and was finished in only one month.  We were told she is one of two that have ever completed the program in that short of a time period.  She came home with only needing water through her g-tube daily.  She absolutely loves to eat and drink now.  Her G-tube was removed in April 2006.  UNBELIEVABLE!!!!  Kylie was able to receive RSV synagis for her first two years and will not be getting those this year.  Kylie is a spunky, fast two year old who really shows no signs of her past struggles.  The only thing people ever say is that she is just a little tiny.  That is OK!!!!  We are so blessed and appreciative of our friends and family.   

While at CMC Kylie continued on the ventilator with fairly low ventilator settings, a doctor at CMC talked with us about a tracheostomy for Kylie because she felt she was having a difficult time weaning from the ventilator.  We actually thought Kylie was doing pretty good after all of the setbacks she had.  Our surgeon felt that we might want to get a second opinion about the trach.  He said CDH babies just need time but he felt she could come off of the ventilator without being trached on a home ventilator.  So Kylie took a journey back to PHD and was successfully weaned and extubated from the ventilator shortly after her arrival.  Kylie did great but was showing alot of signs of severe reflux in which she began aspirating.  She was re-intubated for about three weeks.  This led to Kyie's next surgery in April of 2004.  She had a Nissen and G-tube placed.  Kylie's sole source of nutrition was tube feeding.  She was slowly gaining weight and doing much better after the Nissen with her breathing.  However, during the time Kylie received an overdose of methadone in which she was given ten times the amount of methadone she was supposed to have.  Luckily, Kylie was on the ventilator at this time because she was heavily sedated and unable to breath on her own due to the overdose.  This was just another reason why Kylie really needed to get out of the hospital.  We were always told there are complications of being in the hospital with risk of infection, clotted lines, overdoses, etc.  Needless to say, this statement was proven true during Kylie's stay at the hospital. We are just blessed that Kylie worked through all of these complications.  Like I said, Kylie has been a fighter since she made her entrance....WHAT A MIRACLE our little Kylie is!!! After about 5-1/2 months in the hospital Kylie Rae came home for the first time 07/02/2004.  Honestly, we were scared to death but so, so HAPPY at the same time!  She was coming home with a pulse oximeter, supplemental oxygen, continuous G-tube feedings and 17 different medications.  WOW we had a lot to do everyday but our Kylie was home.  About three weeks after she got home, Kylie had been running a low grade fever , oxygen levels were low according to the home pulse oximeter and just not looking so good and was readmitted back to CMC and was diagnosed with pneumonia.  She was re-intubated for nine days.  I hated that moment and was so upset and scared.  She started steroids during that stay as well.  That seemed to help her so much and she came home with an all time low on her supplemental oxygen.  She was in the hospital for 14 days total.  We felt so good to have her back home.  She was so much better and happier when she came home and they weaned her off of methadone during that stay as well.  By the way the reason she was on methadone was because they use that drug to wean her off of the heavy doses of the narcotic fentanyl in which she became medically dependent on because she was on it for so long.  -----I will continue later...Got to go to work!!!!