Avalyn has had some progress these past couple days. Yesterday she was able to get out of bed and sit on a play mat, which she didn’t care for. But then got to snuggle mom for over an hour while she slept and we rocked. She’s been a lot more awake and alert being off the heavy narcotics and is only on Tylenol and Ibuprofen for pain. Drinking a little bit and eating very lightly as her stomach is still waking up. We’ve seen some random smiles and had some mild interactions from her but she’s still overall not interested in communicating, if it’s not to ask for her paci, then it’s just not much at all. 

Daily, they check her temporary pacemaker to see if her heart is tolerating it’s own pace and still no response. Her underlining heart rate was 40 but has come up a little to 60. Hoping it’s starting to make its way back up. She’s still having some output through her chest tubes, thinking she’ll still need them for a few more days. Yesterday she had an X-ray and it showed everything still looked really good from her surgery. A few small holes in her septum still but they are small enough that they’re not causing problems and should close on their own. One thing it showed was her right side is showing that it’s a little stiff but is likely because it had been doing a lot of the pumping, when both her main Arteries were plumbed to it. Besides letting her continue to rest and start getting out of bed, recovering from major heart surgery, we’re really just watching her heart rate function to determine is she’ll need to go back in for a permanent pacemaker. 

Please, as you continue to pray for her, keep this pacemaker thing in mind. We know that whatever happens in the end, God is and has been watching over her. It’s tough to have your once happy and busy little two year old be going through such a big thing like this. 

❤️