Thursday, August 1, 2013

A small set back

Capri is 3 weeks and 1 day old today.  Again, a day we never thought we would have with her, i am so grateful.  On Tuesday we had her feedings up to 38ccs through her feeding tube.  She has to get to 43 before they will talk about letting her come home.  She was almost there.  Wednesday she spit up several times so they left her 38ccs for the day.  Today she was still throwing up and now has loose stools so they took her feedings down to 27ccs.  I guess she is allowed to have a bad day since she has done so well the last 2 weeks.
I also met with the cardiologist today.  I haven't met with her in awhile so I was ready for an update.  Her echo today showed that her pulmonary valve is doing what is supposed to, letting blood flow through.  Her tricuspid valve is still leaking as much as it always has.  I was hoping the cardiologist would tell me that because her heart has shrunk a little amount that she would be considered a level 2 instead of a level 3.  Unfortunately thats not how it works, the levels are determined because of the valves, not the size of the heart.
As of now, her heart is functioning well enough that they don't think she will need a surgery until she is 2, and at that point she will be old enough for the cone procedure which is the closest to a permanent fix as we are gonna get.   Her oxygen isn't quite enough to be able to be off the cannula so she will go home with an oxygen tank and could be on it for a long time.  She also may go home with a Gtube, which is small tube inside her stomach.  You open the flap stick a tube in and feed her, then close it up and she is good to go.  We are hoping that she will figure out how to use a bottle and can gain weight on it so that we wont have to have a Gtube.  Genetics came and talked to me and everything on there side is clear.  She will not have any developmental delays, she wont have a disability, she will be a normal, just get tired easier than other children.  With every set back we have something positive happen.  I feel like I am on a roller coaster every time i talk to a dr.
Hopefully tommorrow will be a better day, she will keep her food down and we will be able to go up on feedings again.  Everyone keep your fingers crossed