Sunday Evening, August 24th
I can't thank everyone enough who are involved in our family's experience. We are so grateful for the outpouring of support for those that are affected by Emma's story, whether gastroschisis has touched their family or others that they love. I apologize if I'm not able to respond to your comments, but between caring for Ava and Emma there isn't any time to sleep let alone do a blog entry. Please continue to comment and email my wife and I as our community tries to make sense of gastroschisis. 
Emma has had a real rough time lately. She's on oxygen and the nurses say she has a heart murmur, but it may go away in the next few days. She's also losing weight. She's at 5lbs 3ozs now (6lbs when she was born). Apparently it's not unusual for gastroschisis babies to lose weight, but they are still concerned. I was with her until 2am last night and Ashley went in around 3am. I just came back from the hospital on a 2pm to 6pm shift. Her breathing has been slow, but deep. It's dinner time and then I imagine Ashley will head in again. One day at a time, right?
1 comments:
your entire story is a complete mimic of adens (minus the silo) aden has a heart murmur to this day, and i do as well. the only thing i have to do differently is watch what kind of medication i take. no one expects you to respond to comments, you have enough on your plate...more than enough. one thing i would like to suggest is that you might ask her doctor to come down on the morphine a bit. the doses are all set to protocol, and even one less mil in a 24 hour period might make it easier for her to breathe. sometimes medications can interrupt their respiratory system. if they can keep her comfortable on just a little less, then she might have an easier time breathing. aden had a problem with pain medication and "forgetting to breathe", and i've had the same problem with fentynol. never know, might be worth a try.
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