Day 16

Today the nurse put back the ND tube for Lyla's feedings. This is the tube that bypasses her tummy and goes to her small intestine. The problem with her spitting up was unfortunately unresolved. She did better with the 27cal but apparently was still spitting up. I think she was wretching less, but since she is already too low on her volume and calorie intake, Lyla spitting up doesn't leave her with much nutrition.


  Surprisingly she did pretty good while the nurse was placing the tube. She was pretty upset, but it didn't take as long for her to settle. Shortly after the ND was placed, she had an Echo taken of her heart to see how the regurgitation is while she is upset. The Dr. (matiff) was a little surprised to see that it was less than a previous Echo, which is good, but leaves them without an answer to why she gets so upset during her fits. We got some pretty good snuggling time afterward. It felt really good and comfortable. I loved it! And I think Lyla did too:)

  Then it was time for an X-ray. After the nurse places the ND tube, they must get an X-ray to check that it made it passed the stomach and to the small intestine. It did not, which happened the last time they placed one. It coiled in the stomach, so she had to play with it and move it around. The nurse (Cheryl) even had the Ativan ready for Lyla, but she did great and didn't need it!

  Later we snuggled some more and she got a little upset but I was able to calm her. Turned out she had pooped and I would have never guessed.

  Had another purple episode around 8pm:(