Caili had a relatively uneventful week, which all things considered is very good. While she's up to 2 pounds 8 ounces, some of that is excess fluid, and she's still not gaining enough weight on a regular basis. However, she is gaining enough weight that the doctors aren't as concerned as they had been about her weight gain. She's a very active little girl--scooching around her isolette like crazy, which of course burns lots of calories. They've continued to adjust the concoction that they feed her, and today upped the volume, so hopefully she'll soon start packing on the pounds like they say she should.
They tried to wean her oxygen support last Sunday night by lowering her "flow," but her lungs weren't ready. She made a truly valiant effort, lasting until last Tuesday, which was the worst day she's had in weeks. However, given some of the days she's had, it wasn't a bad day at all. So, they moved her flow back up, made some other changes, and she quickly improved. She struggled again yesterday--likely due to the aforementioned excess fluid, and they actually had to increase her flow, but it's still worlds better than going back to the vent.
The highlights of last week were our first experiences with bath time. The nurses had been bathing her in the middle of the night when the NICU is closed to parents, but last Sunday Lauren and I got to help (well, watch), which was fantastic. Lauren and her mother got to participate in another bath last Wednesday while I was at work, feeling jealous. She was an angel for both baths. We have some adorable pictures from the first bath--we'll try to get a couple up on the blog later this week.
I got to hold Caili for the first time in quite a while on Saturday and then again on Sunday night. It had been too long. When she's in my arms my stress and worry just melt away--hopefully the same is true for Caili. Lauren's been holding her for brief stints on most weekdays. We've agreed that she gets weekday holds and I get weekends--at least until they remove the one hold per day restriction.
Holding her came at the perfect time for me, as Lauren and I have had a tough few days. The NICU continues to be full of surprises for it's residents and their families, and the surprises are rarely positive. When Caili was struggling, we noticed little of what surrounded us, focusing intently on our own troubles. Now that she's doing relatively well, we're finding it difficult to bask in the joy of her progress in light of the challenges faced by her neighbors in the NICU.
The tragedy--or even the near tragedy that the NICU heaps upon families is at times too much to bear even just in observation. The emotions of watching another family deal with the severe illness of a child while yours lies precariously close to the line that separates a good day from a bad one are extreme. Lauren and I are frightened that even a small turn for the worse could put us in the same position yet relieved that we're not in that position at the moment. And then there's the feeling of guilt brought on by the fact that our angel is having a good day while others are not. You can't feel celebratory when your neighbors are having a day worse than you could have imagined just 8 short weeks ago.
The day when we get to bring her home can't come soon enough.
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