Hi guys....sorry I haven't been around much. Have had my plate full here.
A bit on what has been happening....
She will be in surgery today to get a Gastric tube put into her stomach, I will no longer be able to feed her by breast or bottle. She will most likely have this in aprox a year or at least until she starts solids. The reason she has to get this is because when they were either removing the mass from her heart area there was damage done to her nerves in her left vocal cords and her left diaphram....or the mass itself damaged them from pressing on it.
At first they believed it was because of her weakend diaphram that was causing milk from her feeding to enter into her respitory system, so they had put her on thickened milk. A week later they tested her with a swallow test again and she failed again even after they thickened the milk to a honey consistency.
So with further tests they realized her vocal cord was damaged as well and that this was more likely the reason for the milk entering into her lungs.
They were suppose to do a simple procedure today to put in the gastric tube by just entering in through her stomach area but after more x-rays yesterday they realized that because her diaphram is too high from not working correctly, that has moved her organs around a bit and her colon is in front of her stomach blocking their access to it. So they had to upgrade the simple procedure to a full surgery in order to enter into her from the chest area again and go down into her stomach
After the surgery today, most likely thurs, I will have to go through 2 day training in order to learn how to feed her by syringe and care for her at home. She will also be on oxygen for a while still...a very low percentage but for some reason they have been unable to wean her off of it.
Sorry for the mini serries...just wanted to keep you in the loop
Oh and to top it all off...Percy is suppose to be leaving for Iraq today.
It amazes me what these tiny babies can endure!! I pray she continues to be such a fighter!!
And Thank you everyone for your positive thoughts and prayers, they have gotten us SOO far!