Noah (Florida)

Noah was born on December 22, 2009, at Lawnwood Regional Hospital in Ft. Pierce, Florida. When he was born he could not hold down his formula, we tried several. He had to sleep in the nursery because they wanted to watch the vomiting. The night before I took him home he vomited green bile. The pediatrician told me the next morning he was sending him down for a upper GI to rule out acid reflux, and that I probably wouldn’t be able to take him home. I anxiously awaited the results of the test, and they showed he had mild acid reflux. So the pediatrician said he was changing his food to Enfamil A.R., and if he could hold down three feedings he can go home so he did. They told me that his jaundice was due to the vomiting and to put him in the window so the sunlight could help the jaundice. I took him to the pediatrician the following week and he was still jaundiced she ran a billirubin test on him. I got a call a couple days later saying his total billirubin was a little high but they would run his bloodwork again next visit. He still vomited every once in awhile not too often though. The next visit at the dr’s we did bloodwork again and the doctor waited for 2 weeks till our next appointment to tell me that one of the numbers on his billirubin went up and the other number went down. She said she hopes he doesn’t have anything wrong with his liver, and to watch out for white poop. She said she wanted to run a liver function test on him and she would call me in a couple of days with the results. She was supposed to call on a Monday but never did so I called everyday of that week and was told no results were back yet. Then the following Friday night Noah woke up for a feeding and pooped and it was white. I called the dr. that was on call and he told me I didn’t have to take him to the hospital just to bring him in on Monday and they will run more bloodwork. I didn’t listen though my mom came and got me and Noah and we took him to St. Mary’s Hospital. They ran a liver function on him and the numbers were off the charts, they also did a ultrasound. The dr. at the hospital came in and said he thinks he has biliary atresia explained to us that it is a undeveloped bile duct and we needed to take him to a GI doctor. So when he explained it I kind of thought to myself, okay so maybe it will take a little while for them to develop and he will be okay. The doctor sent us home with a copy of his ultrasound and labs. On the way home my mother called my aunt and she looked up what biliary atresia was and then we got worried. We slept on it, and they next day I got a call from my mom and we were going to take Noah to Miami Children’s Hospital.We got to Miami Children’s Hospital and went in through the E.R. we showed them the results for the labs and ultrasound. They admitted Noah and put him on Phenobarbital for 3 days and then they were going to do a hida scan on him. The hida scan came back and showed that Noah had biliary atresia. We got to the hospital on a Sunday and he was scheduled for his kasai surgery the following Friday. February 5, 2010 was one of the hardest days of my life when he went from my arms to the surgeons for surgery. It was also the longest 8 hours of my life when he was in surgery. Dr Stylianos came in and told me and my family that Noah did wel. He had a very hard time waking up from the anesthesia so he went into PICU. He was on the ventilator for 3 days and remained in PICU for another 4 days. On February 12th I was able to take him home. His billirubin was still at 9 when we left the hospital. I ended up moving in with my aunt to be closer to Miami Children’s Hospital and also because being a single mother I couldn’t afford to live on my own with Noah.( It is very difficult because he cannot go to daycare therefore I cannot work at the moment.) He did really well at home at first. His billirubin went down to 6.3. The doctors told me to watch his poop and take his temperature all the time. His poop started to look a little white again so I took him to the Dr. they did labwork on him and his billirubin was going up again. So I went into the hospital March 16, 2010. The doctor wasn’t sure if his liver was failing or if he had cholangitis. The doctor also said if we can’t get him to gain more weight we will have to put a feeding tube in him, he said he wants him fatter. So Noah was on i.v. antibiotics, they did bloodwork 3 days later, his billirubin started to go down slowly. We stayed in the hospital till March 31st. They didn’t have to put the feeding tube in him because he did gain just very slowly. He only weighed 6.1 pounds at birth and at 4 months he is 12.7 pounds. He also has acid reflux which the doctor told us that the acid reflux and biliary atresia was a really bad combination. He vomits at least once a day. He is on Aquadeks vitamins and Actigall (urisidol). So now Noah is 9 months old and he just got out of the hospital again with cholangitis. His numbers are great but he does have ascities. We are going for a liver transplant evaluation within the next 2 weeks. He is a very happy baby and has taught me a lot. We take one day at a time and ask God for the strength!! Noah was officially listed for a liver transplant in November 2010. He patiently waits for his gift of life.


No comments yet