Ivy Joy we love you!

Sorry If you've been holding your breath for a post. Between the crazyness that has been going on with Ivy and the hotel having Internet problems, I was not able to post. I have a ton of emails, I haven't responded to because we can't use phones on the cardiac floor so please accept my apology! I hope I answer all your questions here tonight.

I'm posting tonight from my phone so no pictures just lots of info. I will put a couple on Facebook in case you need a quick peek at princess stink eye. 

So where are we? You know she woke up, she's been pretty low key and in a fog until today. Today her mind is as clear as glass and she is less sleepy. Yesterday we moved out of ICU!!!! Yep, hours after waking up!!!! She is off oxygen, getting bolus feeds at night only, eating 3 meals on her own. She has all chest tubes out. She has a picc line that mommy fought for her to get and sure enough her last IV went bad last night. She is sitting up for a good 10 minutes at a time before she complains of pain. She looks so fantastic!!!

The things we are working on are wet lungs. Very wet. Weakness. She has lost so much weight that she can't stand without quivering. So we are trying to get some weight on her with these extra feeds. Her blood pressure meds are still being tweaked a bit. Her pacemaker gets checked tomorrow. She is not turning her head to her right at all. She had a line there that was just taken out and we think its just very sore, but we have someone coming out to take a look and be sure it's not a pulled muscle or something. She gives everyone the stink eye, here in Boston they call it the hairy eyeball. Anyway, I think tonight she finally forgave me for all of this and she spent  the rest of the night in my arms. She took a longer time to go to sleep tonight, another great sign that she is feeling better 

 Her strength after having 3 open heart surgeries in 6 months, is going to be slow to come. She needs to gain weight, gain stamina and ultimately, she needs time to heal!!

Her chest is quite bowed out due to the 3 openings so close together. Her incision looks wicked fresh and frightening still but it is undressed already and doing fine. 

Outside of that, nothing!!!!! She is doing absolutely amazing!!!!! 

God's Miracle !

Thank you for continuing to hold Ivy up in prayer .

Mary