LylaWhen I was 18 weeks pregnant we found out our soon to be born baby girl had Gastroschisis. Gastroschisis is a birth defect where a hole is in the abdominal wall and the intestines are on the outside of the body. During my doctor visits twice a week, we saw that her intestines were getting more and more swollen from the amniotic fluid irritating them. They decided to take her out early, and on March 24, 2011 Lyla Ann Baisden was born 31 weeks 5 days gestation, weighing 3lbs 11oz at Baylor All-Saints in Fort Worth TX. She was transported via helicopter to Cook Children Medical Center only a couple blocks away from where she was born. She went straight into surgery. About half of her intestines, and her ileocecal valve were removed leaving her with 75cm of bowel, they sewed the good bowel together, put them in her abdominal cavity, and sewed her up. She gets total parental nutrition (TPN) which she needs for survival, but can also cause liver damage if on it too long. She gets it through her central line, which is a catheter tube that goes into the chest and large vein going to her heart. While her bowels healed she had a replogle tube down her throat going to her stomach, and sucking out gastric fuild. Later a feeding tube was in her nose and she was getting continuous feeds, but she had a few setbacks, It took her 38 days to poop. Vomiting caused them to stop her feeds, she would either poop too much, it would just go straight through, or she wouldn’t poop at all, and she has swollen intestines. Then she was doing really good for a little while, 16ml an hour continuous feeds, and four 20ml nipple feeds a day, her TPN was off for 6 hours a day, and she got wagon rides round the unit. Then I noticed she just wasn’t acting the same, she was real fussy, didn’t want to eat, and her tummy was big and veiny. I asked them to do a x-ray and mommy instinct saved her life. She had pneumatosis, which is gas bubbles all over the abdomen wall, and that is how they diagnose Necrotizing Enterocolitis Disease (NEC). NEC involves infection and inflammation that causes destruction of the bowel or part of the bowel. They had to stop her feeds and she went back to TPN 24 hours. Everyone was very impressed that I knew something was wrong, because Lyla wasn’t showing any major symptoms. We caught it early enough that there wasn’t a hole in the bowel, and with antibiotics the pneumatosis went away, but Lyla’s intestines were still dilated. On June 9th she had a second surgery. A little more of her small bowel was removed. She got a ileostomy, which is where they pulled the end of the intestine out the skin, and she poops into a bag, letting her swollen part of the bowel rest. She got a g-button, which is a feeding tube straight into her stomach, and she got a new central line, because hers somehow worked its way up to her juggler instead of her heart. After her surgery the milk goes right through her, called dumping. She doesn’t absorb enough nutrients. They started adding Pectin to her milk to thicken it. and said she has Short Bowel Syndrome. By 12 weeks old she had 12 blood transfusions, her body just doesn’t produce it like it should. At 3 1/2 months old she was only eating 3 1/2 oz a day. The doctors knew it would take a long time for her to tolerate as much food as she needs for her wieght, and the doctors and nurses knew I could handle all Lyla’s cares, so they discharged her at 104 days, and what a day that was. Channel 8 News came and did Lyla’s story. Here it is but that isn’t the end of her journey. She came home on TPN and Lipids running 19 hours a day, 4ml an hour w/2% Pectin continuous of a special formula for the intestines called Elecare through her g-button, two 15ml nipple feeds of breast milk a day w/2% Pectin, a ileostomy with mucous fistula, distal refeeds in mucous fistula and a few meds. She will have to go back to Cooks for her 3rd surgery a few months later to hook her bowels back up. Since 1 month old, Lyla’s labs have shown her liver is irritated from the TPN, but she has to have it, because she isn’t eating near enough as she needs for her weight. So that is another thing we are dealing with, the more she eats the less TPN she needs, but her bowels can’t handle that much food