Saturday, April 21, 2012


I don't allow myself to believe in jinxes or any superstitions for that matter, but every time I put on Facebook that Emma is coming home it never happens. Although when I came to the hospital today and learned we weren't leaving "jinx" was the first word that popped into my head.

They want to give me another day to learn how to do the NG feedings. Which I am grateful for. I want to know that I can in fact put the tube in her stomach, and not her lungs, successfully. Half the battle is getting her to hold still. Emma is quite the fighter.

Emma's feedings have taken a big hit since the feeding tube was placed. They want her to eat 55 milliliters every 3 hours. She would have a couple feedings that she would eat all 55 mils before the feeding tube, but at least half of her feedings would be in the 35-45 mil range. Since the tube has been in place she ate 40 mils on her first feeding. 20 mils on her second and then through the night she at 15 mils every feeding. This morning she had another 40 mils and then back to 15.

I'm hoping she is just adjusting to the tube. I know it irritates her, but I was hoping for better results this morning. It worries me that she won't want to eat at all soon. No eating = surgery now.

On another note, I mentioned yesterday she had another echocardiogram. I got the results last night as I was leaving. Her VSD has never shown resistance to the blood flowing through the hole. Holes that show resistance create more pressure, which could be a sign that the hole is starting to close. Yesterday Emma's hole had resistance. I'm told it is just the smallest amount of resistance there can possibly be, but there is resistance! I just want to stand on the roof and shout it to the world! Resistance is a great thing. Emma's echos have never come back with good news. It's usually the opposite. I can't help but hope that we might continue to see positive results. Sure maybe the hole won't close, but it gives me hope that the chance is still there. 

1 comment:

  1. Jenna, you are a strong woman! I'm sorry you have to worry about such a sweet little girl, but you are a good mother.

    Putting NG tubes is scary at first. It will soon become the norm, just like the monitors. That nervousness is to be expected. I know you have other nurses who can help you and you have home health that you can call as well, but I seriously mean this, if you ever want to call me just to talk things through, please do. eight zero one four five five three six nine four. I mean it. Do you believe me yet?

    Best of luck with the NG tubes!!!