Day 10: Orange Sesame Seeds

Today we were on a mission. We wanted answers. We were tired of the waiting game. We decided to become more proactive (thanks Julie), and requested a meeting with all of the key players on Paxton's medical team. We had a meeting with the social worker, the neonatologist, the cardiologist, and the cranio-facial surgeon. The end result...it's still a waiting game.
Paxton's current diagnoses are a heart condition called Ebstein's Anomaly and a facial development condition called Pierre Robin's Sequence. Both conditions are extremely rare. The jury is still out regarding whether there is an underlying genetic disorder to blame, but those results will be in next week.
The current plan of action is to address the heart first, the airway second, and the cranio-facial structures last. Basically, we've got a long road ahead of us.
After all of the meetings, we visited with Paxton. Today he weighed 6lbs, 1oz. Yay! We were happy to see that one of his favorite nurses was back to work with him, although his other favorite nurse was assigned to another room. Paxton's nurse pulled some strings today and informed us that, while they don't typically do this, we'd be able to hold Paxton tomorrow. It is tricky to hold babies with breathing tubes in, but it can be done safely if done correctly. We're super excited about that.
When Susanne changed his diaper today, she discovered that it was full of an orangish substance that looked like it had sesame seeds in it. After Susanne had just finished cleaning him up, Paxton decided it was a perfect moment to pee all over himself. Scott was glad that it wasn't his turn to change the diaper.
We ate dinner at Uno's with Scott's mom tonight and then came back to the NICU to say goodnight to Paxton. When we arrived, the nurses were in the middle of giving him a blood transfusion due to him being slightly anemic. This was likely due to the number of blood samples that had been taken from him thus far.
We decided that while we're waiting for the doctors to decide what to do, Scott's going to go back to Pennsylvania and return to his internship. Susanne does not want to stay at the Ronald McDonald house alone, so our stay here will be ending this weekend.