Unsuccessful Procedure

Teryn had a good night last night and is having an okay day today. She has had a few episodes where we have had to go up on her oxygen. One of the instances I requested it because she was awake and I could see her turning gray.

She got to go up a little on her feeds to correlate with her weight. She is getting to be a chunky little monkey.

This morning during rounds they said they will not be doing the procedure today to advance her gtube. Apparently they were having a hard time finding a tube small enough for her. So I asked the doctors , "What if we can't get a tube small enough?' Their response was "uh," as they all looked around at each other for answers. I got the impression that there wasn't a plan B in place.

A few hours later her resident came in all excited saying they thought they had a solution. She would be going down to radiology shortly and the doctor down there was going to advance an ND tube (exactly the same as the one in her nose) through her gtube and through her stomach and pyloric valve into her small intestines.
We got down there and the first problem was that the doctor looked and said they could not use her current tube, they would have to switch it out for a mic-key, or button. This wasn't so bad since this one would have less of an external tube. This is good since Teryn likes to grab and pull things.
After over an hour the doctor came out and said they were unsuccessful. He was having a hard time getting the tube through her stomach and did not want to force it and risk perforation of her stomach. He said his suggestion was to try again in 10 days. Are you kidding me? And even then, there is no guarantee it will work.

We got back up to NICU and the resident came over. He said, "I guess we will try again in a few days." My reply, "No, 10 days is not a few." I asked what other options there were. Redoing the fundo surgery would have been the first suggestion to reduce the reflux so she can have food in her stomach. However, surgery will not redo it. He said they will keep looking for another tube option and try again in 10 days with the same tube or another if it is found.
They do not want to retry feeding through her stomach because she is unable to handle swallowing her own saliva, they are too concerned that if she refluxes she could aspirate which could possible result in pneumonia.
I am SO frustrated. I don't feel like we are any closer to coming home. Even when things improve it seems like they eventually fall back again. This is getting harder and harder every day. Please pray for me as you are praying for Teryn. I really need a faith boost. I am getting a little discouraged.

Even with frustrating news, I have some very exciting news....Teryn SMILED!!! It was her first official, no doubt about it voluntary smile. She was in her bed lying on her side as she and I were doing some therapy play time. I was talking to her and she locked eyes with me and smiled. Talk about melting your heart. I will hopefully get a picture of this soon.