Isabelle and our familys journey began shorly after she was born. Isabelle would not stop puking and spitting up, she was loosing so much of her food that she could not gain weight. The first diagnosis was made by our local hospital with a ultrasound of her belly. They said she had pyloricstenosis and transfered her to a childrens hospital where they said she would have surgery to fix it and then she would be fine......but they were very wrong. The doctors at the childrens hospital repeated the ultasound the day after we arrived there and were not convinced that it was pyloric stenosis because it did not fit the text book diagnosis. After 3 days of ultra sounds and seeing that none of her food was getting through the pyloric muscle they decided to operate anyway and said that she just was not the typical case. They said she would be able to start eating four hours after surgery and that we would be going home in 2-3 days. To our surprise she was still puking, she was puking everything she ate. The doctors kept saying her stomach was just being slow to except the food and we needed to give it time, so we waited as we watched her loose weight every day. Isabelle was 7 lbs when she was born and 5 days post op our 5 week old baby was almost down to 5 lbs. The doctors then ran a few tests and said she had GERD and some medication should help, it didnt. After a long fight and great display of my temper and reaction to watching my daughter shrink and starve the doctors decided that a central line should be placed and tpn started. A dop-off tube was also placed to feed her bowels instead of her stomech where she would not be able to reflux. Slowely Isabelle started to gain some weight. TPN and the dop off tube were not a long term solution so we gave her a few days to put some weight on and then weined her off TPN and pulled the feeding tube bach up to her stomach and tried again. Once again isabelle refluxed everything and the weight started to go back down. It was time to make a decision, have feeding tube placed into her bowels and bypass her stomach of a different larger surgery to cure GERD. After a motility issue was ruled out we decided to do the nissen fonduplication surgery with g-tube placement seeing as we thought that is what would need to be done eventually anyway. So isabelle was placed back on TPN for some calories and surgery was scheduled. Three days after surgery isabelle was tolerating continuous feeds and we once again weined her off TPN and finally were able to go home with a feeding pump after being there for 4 weeks. We got her home and started adjusting to her special needs....venting every 1-2 hours as the surgery made her physically incapable of burping or puking, carting a pole and pump everywhere, while still trying to care for the rest of our family as isabelle has 3 older brothers. Isabelles weight fluctuated even though she was getting the same amount of food but we just kept going until 2 1/2 weeks after coming home isabelle developed a severe infection and it was back to the chilrens hospital we went. After some heavy IV antibiotice we were able to return home again with no answers to the weight fluctuations. Four days later Izzy pulled her g-tube out and so we decided to have a mic-key button placed instead......i hate it, i miss the regular peg tube. That pretty much brings us to today, Izzy keeps loosing weight even though still on continuous feeds and her calories have been increased. She is also on a apnea monitor for reactive air way disease as she is aspirating her saliva so has to remain NPO. Her most current weight is 8 lbs 9 1/2 oz. There is talk of some biopsys being taken to test for a malabsorbtion disorder but it has not been done yet. Isabelle will never have a completely normal life but we are trying the best we can for her.... our family is struggling with normal bills right now trying to keep up with everything and me having to stay home.No matter what her needs cost she is worth it. Isabelle is our princess, our little miracle. She amazes me every day. Any help would be greatly appreciated and will go to isabelles expences and needs.....I post daily to her caring bridge page witch is listed above as her home page and there are more pictures there as well feel free too visit and sign guest book. Thank you for reading and considering helping our princess and our family.