Day 4(ish)

We are in our fourth full day in the CICU. Alivia has done well - her appetite has been so much better that I'm having trouble keeping up with her! We've had to pace her a bit because she'll take in more than her tummy can handle after eating so little these past couple weeks.

Her stats look pretty good. We took her off what small amount of oxygen she was on, only to have to put her back on 12 hours later when her numbers went down a bit. Her hemoglobin levels are down a smidge today, maybe due to so much blood being drawn, or from simply being sick, so we are watching that. Andrew shares her blood type so he'll do a direct donation if it comes to that.

Yesterday we talked to a LOT of doctors - her regular cardiac/ICU docs, a geneticist and a nueromuscular team. Everyone is really dedicated to finding the cause behind her weak heart muscle. The possibilities run the gamut from simple things like an enzyme deficiency, to a genetic mistake to a flat-out mystery diagnosis. Blood tests start coming in today, we're told. Tomorrow she gets an MRI to get a better look at her heart structure in order to get a better understanding of how this all occurred and what may be causing the cardiomyopathy. (The test was supposed to be today, but we had to wait an extra day because of a scheduling snafu.)

We really like the staff here. The nurses do a good job making us feel like we will make it home sooner than later. One (world-renowned!) doctor is anxious for us to start transitioning Alivia from her IV heart meds to oral meds. It's a 36-hour weaning process. If she does well with that, it's one step closer to going home. We'll begin that process after the MRI procedure, assuming things don't change much.

We ask that you continue to pray for wisdom for the doctors so they make the best decisions possible, for strength for Ali during her test and medicine transition, and for an answer so we know how to best heal her. Obviously, we want the root of this problem to be fixable, but we know that isn't guaranteed. In the meantime, we hope to manage her health as best as possible while we wait for answers.

We had a special visitor yesterday - Tyler! The smile you see on Alivia's face above was one I snapped while he was saying hi to her. It is SO hard to not see Tyler every day. We hadn't seen him since Thursday. We'll be sad to see him go home with his grandmas later today, but I think his Papa will bring him back later this week.

Thanks, again, to everyone for the words of support, offers to help and prayers. Most times, we do feel stronger than I ever imagined we could, and I'm certain that's because of the prayers made on our behalf.