new plan?

After a long meeting this afternoon/evening, we heard a lot of things and I'm still trying to digest them all. But, here were some of the facts:

-Jules now has severe BPD or chronic lung disease.

-If his heart enlargment is worse on the next echo cardiogram, he doesn't show good growth, he needs more oxygen support, or some "constellation," of these together happen -- they might do a trial of CPAP again.

-He will need to spend time at Children's hospital of Seattle in order to go home.

-UW NICU isn't sure when the exact right time to get him to children's hospital is, but they would prefer for him to be more stable, which for them would mean not retaining fluid and going on lasix for a couple weeks or so? 

-They want him to have surgery to get a g tube for feeding. But, he needs to be more stable to do so and only Children's hospital does that procedure.

-The longest time he could spend in the hospital could be another six months (until June). And for sure, he will be there another two months. 

- There is some complexity around his age (almost 41 weeks) and where that means he will go at children's... PICU, vs. NICU, vs. Pediatric floor. Most likely peds floor.

-Winter at Children's hospital is crowded and he might be more exposed to infection with RSV and Flu season.

- Right now, his growth is good. both in length and head growth. his head growth even did some catch up growth possibly. Everyone is pleased with is current growth, but length growth is the most important marker for him and his progress with his lungs.

-Maneesh, the attending noticed that Jules is not too interested in a pacifier and we need to be on the lookout for oral aversions and feeding issues coming down the road.

Okay, I will write more later when I process more. A HUGE thank you to Mark for coming and supporting us at the meeting and for taking notes and asking questions. 

Joy