I’m sure everyone we know, including us, would like to know when we can come home. And the honest answer is that we have no idea. And that’s because the biggest thing holding us here right now is Miss Ava’s Tummy. Her poor little tummy is giving us so much trouble and because of that she’s not gaining weight like she should. It seems that she tolerates my milk OK, but every time they try to fortify it to add extra calories, she doesn’t tolerate it and so they keep having to go back giving her just my milk. But she just can’t seem to gain weight on my milk alone because she’s burning through it too quick and she just can’t take the volume of milk that she would need in order to be able to pack on the pounds. Now they are going to try to increase her volume starting tomorrow, but because her heart is already working too hard, they are fully aware that her circulation might not be able to deal with the extra fluid and so they would have to increase her diuretics, and of course we can’t go home on a higher dose of those guys. So we are still here.
And one of the negative side effects of her not tolerating the formula that they added to my milk was that it was making her gag and retch, which has given her a super-sensitive gag reflex and now she won’t take a soother anymore. Boo.
So tomorrow she is getting a sedated echo-cardiogram just to see how her heart is doing and hopefully her digestion issues aren’t related to her heart. She is also getting her feeding study tomorrow afternoon to see if she still needs thickened fluids because of her vocal cord paralysis, but with her gagging on her soother now, I’m not super confident that she will take the bottle like she needs to for that study, it’s so frustrating!
So please pray for tomorrow. If she doesn’t need thickened fluids that would open the door to taking bottles of my milk or even nursing and if her heart function is Ok then it’s one less thing to worry about.
Sigh… who knew a little tummy could give us this much trouble but we are praying and trusting that God will once again get us through this like He has so faithfully gotten us through everything up to this point. We would really like to come home soon, that’s for sure!