-----> All donations made on this site go to the Caring Bridge organization not to the DuLac family. If you have a desire to donate please go to Super Noah’s GoFundMe page (
https://gofund.me/a5aa126c) or Venmo: @tldulac.
Super Noah has cancer. Specifically diffused large B cell lymphoma. He has been on quite the medical journey, starting with jejunal atresia (at birth), winding his way to a liver transplant (15 mo old) due to biliary atresia, and is currently battling PTLD, which is a cancer affects a very small percentage of transplant patients. Read on in the journal as well as the short explanation of the beginning of his life below...
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For details on the first ten weeks of Noah's life, please see noahdresden.blogspot.com.
Noah Dresden DuLac
Born August 10, 2009
5 lbs 10 oz
19 inches
Noah's story begins about one week before he was actually born. "Real" contractions had started the first weekend of August. They were painful and rhythmic. At that point I was only 34 weeks along. After getting back from a weekend vacation, I went to see the ob/gyn. She told me that I was measuring about four weeks big. That next weekend Tony and I made three trips to Labor and Delivery. The last trip there, on the night of August 9th, showed that Noah was on his way.
As the sun came up the next morning, Noah lived up to his name and created quite a flood. A few hours later he arrived looking like a healthy, 5lb 10oz baby boy. Little did we know there was a reason for the flood.
Later in the afternoon, the nurse from the Special Needs Nursery came to tell me that he wasn't able to keep down any of the breast milk. He vomited all of it back up. The doctors decided he needed to be evaluated at Children's Hospital. So that night Noah had his first ambulance ride, sirens and all, to Children's Hospital.
They found out that night that he was having intestinal issues severe enough to do exploratory surgery with the possibility for some sort of correctional surgery. During surgery the next day, the surgens discovered that he had jejunal atresia with malrotation, which basically means that he had a blocked and rotated intestine. They were able to fix it and save all of his intestine. There hope at that point was to have him recover and go home within a month.
That was almost eleven weeks ago. Complications began with inablility to retain his temperature or gain weight and continued with a UTI, pancreatic enzyme issues, and a history of high bilirubin. Not to mention fact that his feet have been swollen since birth, indicating a lymphatic issue.
A chromosome test was issued and revealed that he was a normal baby boy. Cystic Fibrosis was rule out with a sweat test. Then they started to think that the higher bilirubin levels were being caused by something called biliary atresia, which is a blockage in the liver. A few weeks ago he made another trip to the OR for a cholangiogram and liver biopsy with the possibility of a Kasai Procedure. A cholangiogram is a liver test where they inject dye into the liver to see the branches of the biliary tree, whether or not they are blocked and look normal or not. A Kasai Procedure is done when an infant under three months of age has biliary atresia. It basically moves the intestine to a part of the liver that does not have the blockage.
Typically, the blockage with biliary atresia is at the "trunk" of the liver, if you will. The first cholangiogram revealed that Noah's liver is a mystery. They couldn't rule out biliary atresia, but were not convinced enough to do a Kasai.
Earlier this week a liver specialist looked at Noah and told us that we need to repeat the cholangiogram. She thinks that he may have a very rare form of biliary atresia, which presents farther within the liver than where they initially had looked. There is also a posibilty that he has a different liver issue, the name of which escapes me at the moment. The good thing is that the surgens know more about what they are specifically looking for this time around.
Noah is otherwise very healthy. He is getting pancreatic enzymes via baby food, including applesauce and bananas! He smiles, laughs and coos. The nurses are able to take him off the monitors and put him in a swing, the stroller, or just walk with him through the ICC. He isn't chubby and looks a little bit yellow, but is a handsome, blonde, blue eyed little man. With almost three surgeries (third to be scheduled soon) under his little ten week old belt, he's a strong, little fighter. I'm a proud mama.
