Even it this crazy time Shazam and I have had several really good laughs. Last night we had one of those moments. After spending the day at the hospital and paying for our parking we were standing at the Elevators to go down to our car. I pushed the button and both elevators opened at which time Shazam entered the left one and I entered the right. The doors closed and it was only when the elevator started going down did I realized Shazam was not with me. Shazam unfortunately realized that I was not with her sooner and opened the door only to find herself alone in front of a bunch of people who were obviously all laughing about our idiocy. Simultaneously I was downstairs waiting for Shazam to join me in the garage in complete hysterics. Perhaps you needed to be there but it did let us get a good laugh in.
Like all parents who are about a month in we are starting to get a little bit of a routine in. We get up in the morning and try to get something done (we are more successful at this on some days not so much on others). We then get ourselves going and get to the hospital at about 1:30pm. We like to be there for at least 2 of Ella's care times where she is fed, diapered, temped, and examined. We get to do the temping and diapers and change her clothes. The nurse sets up her feeds and checks to make sure all systems are good. Since Ella is doing so well we have been able to take her out of her isolette 2 times a day!
Another step on the road home is that Ella has started non nutritive nursing once a day. Which means that I put her to breast once a day and let her fool around and get used to nursing. She isn't getting much milk if any but she is latching on and sucking which is great. She also only had one spell the first day while nursing another good sign. She is a big fan of her pacifier and roots towards the breast when we hold her (regardless to which Mom is holding her).
Ella is also doing much better on her spells. One of the residents told us yesterday that she seemed to have "turned a corner" with her spells. The are much less severe and and she had only 2 on her flow chart yesterday when we left at 9 pm. This is a great improvement and she didn't have any while we were there yesterday! It is so nice not to have her alarms going off all the time. She used to spell a couple of times each feeding now this is becoming more and more rare. Since she has to be 5 days spell free to go home we are hoping that she continues to improve and grows out of the "habit" soon. There are several people that are on spell counts where they were all ready to go home and then spell so they have to stay another 5 days. It is so frustrating for the parents who just want to take their baby home and feel like they are so close only to have it snatched away. Cross you fingers that we don't have to play that game and Ella's spells resolve before we are thinking about going home.
Ella still has some big things to get done before we can even think about taking her home. In addition to having no spells for 5 days, Ella needs to take all her feeds by mouth and keep her body temperature up in room air. Ella has met none of these criteria but is working towards all these goals each day. Her isolette temperature gets lowered every other day and is now at 80.2 (down from the 90s when she was born) they will lower it slowly until it is room temp. and she can move to an open crib. She also has to figure out how to eat (which is not small job).
Baby steps for Baby Ella. It is a long road home but we will make it there we just need to give the girl some time.