more surgery

That's right - I was surprised myself! The surgery Emma will have tomorrow is called a tongue-lip adhesion. The end of her tongue will be stitched to the inside of her bottom lip until her airway grows enough that it no longer gets blocked by the tongue.

Now, this won't fix the floppy airway, nor will it fix the reflux that also cause her heart rate to drop! Until the heart rate drops no longer affect her SATs she can't come home.

In addition, once she is extubated after the surgery they will have to get her feeding in her stomach again, and it will need to be bolus feeds (every few hours) whereas now it's continuous 24/7. Only if she tolerates that, and the reflux is not a problem can she come home.

However if it looks like she won't be feeding orally for a while, if at all, they will want to put in a g-tube (a direct feeding tube into the stomach). More surgery. If the reflux continues to pose a problem they will do fundiplication (tie the top of the stomach around the oesophagus to restrict the reflux). More surgery.

If it sounds like the process is never-ending, that's because it is! On top of all this she continues to get physical therapy for the torticolis and low muscle tone in her body. she is getting occupational therapy, and will need speech therapy for feeding and talking when the airway is resolved.

In spite of it all she continues to steal the hearts of her nurses and parents!

Yesterday her nurse practitioner came by to see her and How Great Thou Art was playing on her CD player. She told Emma "that song always seems to be playing when I come over. I feel like God is watching me over here!" How right she is, he's watching over us all, ready to help when we call out.