Just wanted to update you on Emily and let you know about the news that we have received today.
Yesterday, I talked to the cardiologist and here is the scoop (in the plainest English I can muster): As Mike mentioned, they are not concerned about the valve in Emily's heart that did not close - the opening is not big enough to cause issues for her. However, when they did the echo-cardiogram they did discover something odd. It looks like she has a Partial Anomalous Pulmonary Venous Return. That means that one of the veins that is supposed to go from her lungs to the left side of her heart appears to be going to the right side of the heart instead. This causes the right side of her heart to work harder than it should and can cause it to get bigger than the left side. Many people live with this condition for a long time & don't even know that they have it. Since Emily's symptoms are not that serious they are not going to take action right now. She may need to have this corrected surgically as she gets older (maybe when she is 6 or 7). So in the meantime, Emily will have one more doctor to visit on a regular basis as the cardiologists keeps an eye on her heart to make sure things do not get worse.
The surgeon has checked on Emily and says that she looks good - she has been healing well from her g-tube & nissen surgery. He may change the tube that she has before we are sent home, but that is a minor thing and will not hold us up for long.
Now on to the good news...........
Emily will be able to go home on Monday as long as she continues to gain weight on Saturday & Sunday. Mike and I have talked about sneaking her some extra feedings just to make sure this happens! As of last night she weighed 10 lbs. 10 oz. - she put on weight for the first time in quite a few days. She has been losing weight since the surgery even though she has been eating more than 4 ounces at each feeding. They switched her formula to a soy formula. So far this seems to be helping with the weight gain & some other issues she has had (excessive gas & explosive diarrhea - YUCK!).
One thing that we do ask that you pray for (besides her gaining weight ), is her bottle feeding. Since the surgery she has a lot of excess secretions in her mouth & this makes her gag and retch. Because of the nissen she can not throw up, so when she gags it is pretty horrendous to watch. She does OK spitting it out or sometimes swallowing it, but it seems that she will have to learn how to handle this on a long term basis. We think this issue has caused her to lose interest in bottle feeding - she seems to think that she will gag whenever you stick the bottle in her mouth. So we need to work on this with her and the speech therapist. Our hope was that she would do well with the bottle feeding once she went home and right now we are not sure how this will go. So we ask that you pray about this. We are thankful that she can still get the nutrients that she needs through her g-tube & this won't affect her health, but it would be nice if she would eat from a bottle and eventually have the g-tube removed if that is what God wills.
Mike and I have talked a lot recently about how thankful we are. Spending time in the NICU helps us to realize that we really don't have it so bad (although it may sound that way to some of you). God has blessed us with a beautiful girl and we are so grateful. She has some challenges ahead of her, but they are nothing compared to the struggles a lot of others have. And we know that the Lord is with us every step of the way - that brings us such comfort!
We do thank you for all of the support, prayers and love that has been poured out on us. God has provided for us in every way possible. We will continue to keep you posted about Emily's progress.
In HIS strength,