C will be going back to the hospital this Wednesday, Feb 24 to have two gi tests done. She has not turned around her eating yet and she is now in a danger area for growth. She is just not gaining as quickly or as much as her docs would like (At 6 months old she is 12lbs, 7ounces...she should be close to or over 16lbs based on her birth weight). So, C is scheduled to have the upper gi scope and have a ph probe placed. The scope should give us some answers about the make-up of her tract and also show if there are any problem areas. The ph probe will be in place for 24 hours and measure how much acid is coming back up and how high up the tract the acid is coming...if any at all. The ph probe will be the definitive answer on whether C does in fact have acid reflux. She was diagnosed as such based on our description of symptoms but has never been tested for it.
We have learned that C will need to go under anesthesia for this. We were really hoping we could get by with just sedation. I really dislike having her go under anesthesia again for what is a 10 minute procedure but her cardio doc says this is the better way to do it.
C will be staying in the hospital at least one night (ph probe needs to be monitored) but we have a strong feeling that she will be there for a little while. Her eating is so horrid right now that we really do not think they are going to let her out. I am sure she will be put back in the cardio icu because of her heart and getting discharged out of the icu is like trying to get Congress to work. Takes forever. The icu docs are always coming up with one reason after another to keep the babies there for "observation" and unfortunately C has a real issue right now with her eating. We are also thinking she will not be leaving the hospital without a feeding tube placed.
However, we are staying positive and hoping for the best. All we really want right now are some concrete answers (yeah right!) and some relief for C. We can definitely now see the toll this is taking on her. She either eats very little (or none at all) and/or eats the bare minimum amount, which would be okay, excepts she throws it all up. All of it. The whole bottle. She gets listless and blueish looking because she is sooo hungry but in pain when she eats. She is treading a very fine line right now and we just want her to feel better so she can be her normal happy self all day.
I will let you all know how she is doing and once we get any kind of answers. Although C will not be having any surgery this time, I am still asking everyone to say a prayer for her. Anesthesia is risky with heart babies. Thank you all so very much for your love, support and prayers.