Get Physical

Do you think she looks like her dad? Here is my 3-day-old picture.

Elise taking a nap with her bunny from Aunt Jane and Uncle Sam. Chillin' out in Grandma Marcie's outfit. Elise was feeling up to it, so I did some exercising and stretching with her. That feels good dad, I can take bigger breaths when you do that. Elise did pretty well today; not so up and down on her sats. I think she really needed that Lasix to get some fluid off her lungs. She's been hanging out in the 90s steadily today after getting Lasix every 12 hours, beginning yesterday morning. They converted her to oral Lasix today. Her sedation wean has got her taking Ativan 0.2 and Morphine 0.3 every six hours, alternating the two every three hours. She stills gets a small dose of hydrocortisone and some MV with iron all through her NG tube. Converting the Lasix to oral was the final step in allowing us to remove her umbilical artery catheter. She now no longer has any indwelling catheters! (A good note from an infectious disease standpoint.) We are holding on to the continuous breast milk feeds through her NG at a rate of 25 cc/hr. She is still breathing a little to quickly to tolerate a bolus feed. The bolus feed would be the same amount of food given over two hours with a one hour break. We gained some advice from friends at St. John's NICU, and it seems like it would be best to continue our stay here in St. Louis for a while. The continuity of care is important, and it is also very nice to have our private room. We also don't think she will be able to comfortably travel for a little while. Kristin and I are going to return to Springfield this Tuesday so I can work a shift at St. John's and then go back to St. Louis on Wednesday. This will give us a short break, allow us to see family and our doggies. We still aren't sure how long we will be here, a week or two is very possible. Even at that time she will go home on her hydrocortisone for a short while, and possibly Lasix and oxygen via a nasal cannula. We can't forget that her lung disease is substantial and that she will need time to grow out of it. Today she tolerated me doing some stretching with her, as she gets really stiff and I hope to expand her chest to improve her breathing. When I got finished with her, occupational therapy came in and worked on her further. Kristin and I enjoyed a nice walk to and through the zoo today and are going to have dinner with Uncle Don tonight. We feel pretty good about today and hope that we can stay on a level plain with her progress. Love you all, Jason