Now that we have been home a week, now that she knows she is safe and she has a choice, she wants nothing to do with doctors and nurses and such. She asked her physical therapist to leave and showed her the door the entire time she was here. She still held out all the right body parts today at her cardiologist appointment (it was rescheduled for today). And she was pleasant as can be at her pediatrician appointment yesterday.
And I am OH SO HAPPY to report that our baby girl is NG tube FREE!!!!!
Because with a mama who refused to give up and a baby who tried her hardest to eat as many little bites as her tiny tummy allowed...
IVY GAINED 1 pound!!!!!! That is a whole lot of weight for 6 days, on a fat free/low fat diet!!
She is up to 17 pounds!!
She is drinking her milk with vanilla carnation instant breakfast thickened with simply thick. She drinks her water with simply thick. It makes the liquids thick like a hair gel... yes that thick, and gel like. But she finally began to notice how much better she feels when she drinks so she doesn't really protest any more, she just makes a face like, wow, that was nasty!!
Our cardiologist appointment went well. No, it went Really Well!
She had a chest x-ray, EKG, and Echo Cardiogram. everything looks GREAT!!!!!!
Her oxygen saturation was 90. She ranges in the low 90's all on her own now!!! Previously she was in the 40's folks!!!
We no longer need oxygen assistance at night!
She is absolutely amazing!!!!!!!!!!
It is times like these that Awe and Gratitude overwhelm me.
Those moments when I just want to thank God over and over and praise Him for the good things in my life, the huge hurdles that He has allowed Ivy to overcome and the growth that He has done in me through this time!
Now I need some great ideas on how to hide medicine!! Jaime?? Anyone? giving her thickened medicine triples our volume and she already gags on just a taste. I have tried gelatin, pudding, sugary things... nothing keeps her from gagging on her Lasix (Furosemide). It has a strong alcohol taste and she needs it twice a day. Today she is as puffy as a beach ball because she has been throwing it up. Her ankles run right in with her feet and her eyes are squished! Doctors said, ~she needs every drop of it twice a day, can't afford to miss a drop, we know you can do it!~ ouch!
By the way, Guess who's turning 2 on Sunday?????????????
Oh give thanks to the Lord; call upon his name;
make known his deeds among the peoples!
Sing to him, sing praises to him;
tell of all his wondrous works! —Psalm 105:1-2
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