This blog is something I’ve been meaning to start, just to keep my head straight with all the doctors appointments and hospitalizations we’ve had, and have in store for us down the road.
Our sweet Bailey Anne McIntire was born on January 22, 2017 at 6:08 p.m. weighing 7 lbs 14 oz and 19 3/4 inches long. Within 48 hours, doctors informed us that her conjugated bilirubin was elevated, which could mean a number of different things or could mean nothing at all. “You could never see me again, or you might be seeing me for the next 18 years” is what Dr. Sonny Harpavat said to us. This is one of those conversations that will forever be etched into my memory because we just thought nothing could possibly be wrong with our perfect little girl. She had no symptoms of biliary atresia, she was eating, popping (colored poop!), peeing, and had no signs of jaundice skin. After ruling out everything else from the newborn screen, getting a liver ultrasound, chest x-ray and doing another set of labs, Dr. Harpavat told us all signs were looking at Biliary Atresia.
We got to go home for 2 days, then were admitted to Texas Children’s on January 28th. Bailey had her Kasai procedure on January 30th, her 8th day of life. She was in the hospital for 19 days after her Kasai, for suspected Cholangitis (infection in the bile ducts). She was sent home with a feeding tube in her nose for feedings, and a central line in her chest to continue 21 days of antibiotics (Zosyn). (Will post more of a timeline when she got the PICC out, and NG tube when I can sit down and sort out the dates.) She is now bottle feeding 3-4 oz every 3 hours, and is getting less and less jaundiced everyday. Bailey is our little fighter and we are so proud of her and proud to be her parents!