2003 Journal Links

Today Archie is five days old. The nurses in the NICU dressed Archie for Halloween and took his photo. He wore a green bib with an orange pumpkin and a pair of green booties with purple goblin faces on them. I'm sure he was supposed to be some sort of goblin, but with his long, skinny legs Archie looked more like a frog than he did a goblin.

Right now Archie is having a tough time trying to figure out how to feed. Apparently it's quite a task trying to figure out how to coordinate breathing, swallowing and tongue movement. During his 9 p.m. feeding, Archie took roughly 27 cc's of his bottle. This is his best attempt at feeding yet! He has to be able to eat 50 to 55 cc's within a half hour for each of his feedings (12 a.m., 3 a.m., 6 a.m., 9 a.m., 12 p.m., 3 p.m., and 9 p.m.) in order to be released from the hospital. Dr. Newell, Archie's neonatologist, suspects that our boy may reach this goal in two to three weeks.

The little guy has a bad case of diaper rash. His bottom looks better today than it did yesterday, but still appears very uncomfortable. The nurses change him as often as their able, but I'm sure Archie sits in a dirty diaper longer than he should. John and I try to change him as often as we're able when we're sitting with him.

Today was a much better day than yesterday and the day before that. Archie is still fighting jaundice. Both his conjugated and unconjugated billirubin readings were up on the 29th and 30th. We learned that conjugated billirubin can cause damage to the brain if it gets too high, and Archie's conjugated count was high. That scared us quite a bit. Turns out, too, that the phototherapy that causes the unconjugated billirubin to fall can also cause the conjugated billirubin to rise. We have to get Archie's unconjugated billirubin to fall so that he can regain his muscle tone, but no one wants his conjugated billirubin to rise anymore than it has.

Yesterday we also found out that Archie has Transient Myeloproliferative Disorder (TMD), which could possibly lead to cancer. TMD is a possibly cancerous condition in young babies with Down syndrome in which there are abnormal myeloid cells. The abnormal cells may go away without treatment, or they may become cancerous. Our very basic understanding of TMD in Archie is that his white blood cell count is abnormally high and that he has several "blasts," or immature cells, in his blood. If Archie did not have Down syndrome and maintained the same unusually high white blood cell count, he would be diagnosed with leukemia. The good news is that most patients with Down syndrome who develop leukemia can be cured with current treatments and actually stand a better chance at going into remission that patients without Down syndrome.

Right now Archie's doctors are looking at his blood each day to watch the TMD and hopefully see that it is going away. If it becomes worse and seems like it will harm Archie, his doctors will then treat him with one of the following treatments: 1.) an exchange transfusion or leukophoresis; and/or 2.) chemotheraphy with an anti-cancer drug given in the vein. An exchange transfusion involves replacing Archie's blood with blood products donated by others that are free of abnormal cells. Leukophoresis is a process in which Archie's blood will be filtered and many of the abnormal cells will be removed. This procedure may not possible for some infants because they are too small.

The doctors really don't seem to know how the leukemia would affect Archie's heart defect. They have mentioned that one of the drugs they'd use to treat the disease may affect the heart, but that's all they said. My father contacted my cousin Tom who is an oncologist at Massachusetts General Hospital for further explanation. Tom is talking with Dr. Hayes, Archie's pediatric hematologist/oncologist, and has involved Dr. Howard Weinstein, the head of pediatric oncology at Harvard Medical School. We are very grateful to Tom for his all of his help. It is good to know people.

We don't know what to do now other than hope for the best.