so i thought to help counter some of the overwhelmingly sad post (which i think were fine to share) i would make a little list of how blessed and loved we feel right now. you see, just a few days before we were admitted to riley, jason's pay went from hourly to salary. he is still doing his best to get at least 40 hours in every week, but i can't begin to describe how much more breathing one can do when finances are still in order.
on top of that we have had so much gifted us since we have been here. people are giving us gift cards and money (which are very helpful for gas, and meals for mama). abigail has been given some books and matchbox cars. we have been given snacks, bought meals, and had a large entourage of friends love on our big girl while jason is working.
i have had visitors to help pass the time, and keep me sane while i mostly sit in a hospital room for long hours every day. i have a laptop here that i can use to communicate with others as well as watch netflix to help keep my spirits up. i need to laugh, and this makes it possible.
i can't even begin to list everything here that people are doing for us. it's hard to put into words how thankful we feel.
so beyond that our update as of now is still technically 'stable.' we have had some issues with low platelets and hemoglobin so shilo is receiving some blood transfusions today to help out with those. the doctors decided to give her a few days of same vent settings because trying to wean her has been a disaster. every. time.
so our big *thing* hanging over our head is heart surgery. there isn't a magic age or weight that they do the av canal repair at. they sort of play it be signs/symptoms with each kiddo. shilo was on par for having hers done around june or july.
but sometimes, when unrepaired heart kiddos end up intubated, they become dependant. and as a result heart surgery must take place before they can be extubated. and while we are still somewhat hopeful that she will be able to come off the vent and we can go home and grow before surgery, her refusal to even allow the vent to be turned down is making it look more and more possible that we are here until after a heart surgery takes place. and that isn't possible until she has been well for a few weeks. and we've been here almost two weeks and she's still not well. so you can figure out the math on your own.
we have been hesitant to put this out there because we are trying to live in a place of hope. however, we would really love for people to join us in praying that she will get stronger and be able to be extubated so she can go home and grow before surgery. this would be best for her.