Zoe's dear friends - the visiting nurses who have loved, nurtured and ministered to her since she's been home - had to say good bye to Zoe yesterday.
When we were told the visiting nurses were going to come every month, Jen and I both thought it was a ridiculous proposal. Our child was going to die, and there was no stopping it, and we didn't want a nurse to come and "help."
Then, the nurses visited and it was really a troupe of professionals sighing deeply and looking somber and asking us gingerly if they could hold Zoe.
Children's Hospital Wisconsin got a hold of us and told us that we needed the visiting nurses. If Zoe died while at home, the visiting nurses were needed to verify that her death was due to Trisomy for the police.
So we invited them back in, but this time they brought a whole new crew of people who were exceptionally nice and not the least bit somber. They befriended Ethan and Aidan, and Jen really looked forward to their visits.
When we moved, we switched counties, but the visiting nurses continued to visit. They brought gifts for the boys, and gave Zoe a wonderful 1st Birthday present.
Yesterday, they told us that it was their last visit. They said insurance kept asking what, exactly, they were visiting for. They said that initial conference calls with Children's seemed to be filled with some dread about how Zoe's condition would change, which morphed into mild conversations about Zoe's status.
Even while there are things that have us concerned, by most measures, Zoe's doing just fine. And the thing about the police? The nurses had never heard that one. They said that was never a reason they were necessary.
We were blessed to have them visit and happy to have them around. Zoe and we thank them.