Kyleigh Update on Feeding Issues

Today we took Kyleigh (my parents were the chauffers) to Duke for a feeding consultation. During the feed with the therapist Kyleigh was definitely having labored breathing and it was coming out of her nose. If you have never witnessed sweet potatoes come out of a baby's nose then you are blessed because it is so pitiful to watch her gasp for air and cry because it hurts. The therapists stopped the feed, went to talk to a doctor, and got orders for a swallow test so they could see what was going on. She had to first drink a thin mixture of barium, then tried to drink a thick mixture but couldn't get it out of the bottle because she can't get suction, then she ate sweet potatoes mixed with barium and puffs dipped in barium. Her facial expressions were hilarious as she ate and ate. You could tell it was disgusting but she kept opening up like a baby bird eating the best worm. You would've thought it tasted like cotton candy but anyone that has ever drank barium knows it taste horrid. What we found out is that she is protecting her airway while eating so she isn't in serious danger. However, she has a slow response swallow. She gathers food or drink before swallowing and then when she swallows some goes down and some goes up the sinus/nose cavity. When the consistency is thick then it just sits and builds rather than slowly running back down her throat. That is why she experienced a "non-breathing" episode while eating last week and why she experienced labored breathing today. The only thing we can do is try to encourage her to take many swallows with each spoonful and take breaks after several drinks. This will only resolve when the cleft palate is repaired. Until then...sweet potatoes out the nose will be a daily happening for sweet Kyleigh. Come on January 28th!!!!