Urinary Tract Infection

This past monday Taylor was hypothermic and then she became lathargic. We noticed that she wasn't voiding as much as she usually does. When we got her back to regular temp. she became very active. So we went ahead and took her to preschool/daycare on Tuesday her nurse Rosemary heard some congestion in her chest so I went back and got her from school then we took her to the doctor and found she has her fourth UTI in the last year and half. Next week we have some tests scheduled for her to see if we cannot find out the causes.

The beginning of the surgeries

Since then Taylor has had an encepholcele removal it was filled with over 600ml of fluid and 1/3rd of her brain which also had to be removed, a G-tube (feeding tube) surgically implanted, cleft lip repair, a VP shunt installed, VP shunt revision, BMP Mastergraft, Crainoplasty, eye cleft repair, BMP Mastergraft II, Crainoplasty II, VP shunt revision II and one of her fingers had to be partially removed due to the Amniotic Banding. Taylor was born with most of her Frontal, both pariatial and most of her occipital bones missing. She also was missing most of her fingers and toes, a facial cleft which caused one of her eyes not to be able to develop completely and she is also blind. Even with all her medical issues she is the happiest child I have ever seen. She is the biggest cuddle bug around. She loves to laugh at the Andy Griffith Theme song and play patty cake.

Taylor's Journey

Let me start by telling you how Taylor's journey began. In the middle of fall of 2005 when my wife Christy was pregnant we were told that our child may have Down Syndrome, we were devastated. Dr. Lebel (OB-GYN) asked to go and see a maternal-fetal specialist the following day. The next day we went to see Dr.Gregg (Maternal-Fetal Specialist) after performing all of the test he said that the results were worse then previously thought, he said our child had Anencephaly caused by Amniotic Band Syndrome he then informed in his best medical opinion we would need to terminate the pregnancy because our baby wouldn't live more than a few days if it made it full term; after alot of prayers and consulting family and our pastor we decided that "if GOD has decided to give our child a heartbeat then it isn't our place to take it away from her. Fast forward to March 24, 2006 11:44am @ Greenville Memorial Hospital this is it here she is our precious daughter Taylor. The medical staff informed us that she would live for only a couple of hours due to her conditions. At 12:30 am on March 25, 2006 a nurse from the NICU came to my wife's hospital room and told us this was it the baby was about to die and wanted to know if we wanted them to bring her in the room with us so she could pass away with us, I told her NO I want you to do what you need to to keep her comfortable and everything they could to keep her alive. The next morning after very little sleep they brought our lil girl to us she was having trouble breathing and the medical staff didn't want to feed her because they said she could aspirate on the food. So we waited a little while and kept wondering if we should get the nurses to feed our daughter; Taylor our daughter stop breathing twice for several minutes we thought this was it, but she is a fighter and she started breathing again. After talking with my wife's nurse she told us that it is our decision and don't let the medical staff make our decisions for us if want Taylor to be fed then they would have to it. When Taylor started to get fed she started to get her strength and became very active. After Taylor was born the hospital released her five days later on hospice. After a few months had passed Interim transferred Taylor to Pediatric Home Health Care because she has defide the doctors diagnoises and was still alive and kicking. Then the home health care system in Greenville dropped all of the pediatric patients.