Heading Home?

Here I am getting to relax with my Grandpa Drennan for the first time. and Grandma Gail The look of frustration.

Here is Dr. Laurence, the neonatologist that brought Elise to St. Louis. He hadn't seen her progress yet. I figured out that swaddling is alright. Sometimes, though, it makes me feel like I'm in prison and I scream bloody murder! Here Kristin is trying bottle feeding. Elise is working on figuring out the bottle. Here is Elise in her first bathtub bath.

We're having pretty good progress. We're trying to encourage more oral feedings, an important step in getting home. We've further decreased her flow, now down to 1 liter of 45% oxygen. At this rate she no longer has to be on the high-humidity air that has been squirting her nose. She still coughs quite an awful lot and this often causes her to gag and lose her dinner. We are currently feeding her two hours on at 60cc/hr and off for two hours throughout the day. This allows us to attempt oral feedings between NG feedings, allowing more time for her to experience hunger. The problem has been with her vomiting during or after every feeding. We're not totally convinced that it is a problem with the volume of food she is receiving and if we were to lengthen the time over which she is receiving it, she will be less likely to get hungry for oral feedings. However, if she is not keeping down the milk she won't grow and recover. We don't believe it is a result of withdrawal as she has been doing well otherwise. I stayed with her overnight to try to get her to bottle. We are only able to get her to eat 6-10cc at a time. She thought it would be fun to get really pissed off last night with me, so that she would be really calm and restful with Grandpa Drennan and Grandma Gail today. I'm still working to figure out how to read her and it gets really difficult with her special situation. Today they discontinued her Ativan and she is still on 0.1 mg of morphine daily. We talked to Dr. Downey today about the possibility of transferring back to St. John's this week since Elise has gone down on her oxygen requirement so much. She is going to talk to St. John's tomorrow (Monday) about a transfer on Wednesday. I'm very happy with this because I'm going to work at St. John's on Tuesday for a shift. Dr. Downey felt like it is a decision she would make herself in our case. Our plan at St. John's would be to work her to full oral (breast/bottle) feedings and to wean to a 1/2L or less of oxygen. She will be completely off hydrocortisone in the first week of June and we will go home with the Aldacticide. The Aldacticide will slowly be removed as she grows out of it. Love you all,

Jason