Angels

My hands are chapped from excessive Purelle useage and my cuticles have been sufficiently nervously picked. I'm totally into the sterility of the hospital and wish that I lived in a house that was as clean. I would like to hire someone to do a deep clean of our cozy but dirty apartment in Brooklyn before Desmond comes home.



Dolores, the NICU's developmental feeding specialist, is one of the angels of the NICU. She has worked with Desmond for three days. She is a bad ass, a feeding rock star and appropriately looks like a cross between Joni Mitchell and Janice, the lead guitar player from the Muppet Show's band, Electric Mayhem. I am fascinated by her job and I ask her the path she took to become a feeding specialist. It turns out that her background is in special education and before becoming the feeding specialist she worked as an early interventionist with families in the NICU. She speaks my language and says amazing things to Dezi while coaxing him to take the bottle. Her voice is soft and she assures Dezi that he's, "Doing good work." She also mentions to me that we need to keep the feeding experiences positive and encourages me to cheer him on too. I keep waiting for her to say, "Fer sure, Dezi."

She explains to me that a baby who is as old as Dezi is (two weeks) who hasn't yet swallowed anything other than saliva can have difficulty coordinating sucking and swallowing. Also, for a little guy who's trying to master breathing, he gets a little spooked when he has to hold his breath to suck. His first bottle which contains about 1 teaspoon of milk took a little time. He fights it a little bit which makes sense for a kid who is used to having nurses stick little suctioning tubes into his mouth and nose. It was amazing watching him get the hang of it all in the confident, calming and reassuring hands of Dolores. In the two days since that first bottle he's become more comfortable with sucking. When I popped the nipple in his mouth today he knew just what to do with it. Shane watched him bottle feed for the first time today and said later that it was really, really wonderful to see him eating. Go, Dezi, go!

All children with CDH experience varying degrees of reflux. He's given medicine to keep the reflux to a minimum and has been doing very well so far. So well, in fact, that yesterday they discontinued giving him lipids and today they were able to remove the last intravenous line which was delivering the TPN (total nutrition.) It is an incredible feeling, a rush of joy, each time they tell me another tube has been removed.

He's working on breathing without his CPAP as well. And has been off of it for several hours at one time.

The daffodils are starting to bloom. The crocuses are here too. Mahalia is fighting what I hope to be her last winter cold. I am looking forward to bringing our boy home.