Michelle - posted on 02/17/2015 ( 4 moms have responded )
I'm a new mom to twin girls 3mths old and one is still in NICU. She now has a feeding g-tube and is still not sucking or swallowing. Since she isn't swallowing her secretions she also has bradycardias that sometimes go down into the 50s so they will not discharge her. She is now at 7lbs and her sister is at 10lbs. Her team of Drs have ran multiple test and MRI's to airway evaluations and every test come back normal. So far all her genetic testing have came back negative except we are still waiting for results on Cornelia de Lang. My questions is the Drs have done all they can do is what it looks like to me and this week we are having a conference with the team to see whats next. If they can't help then who can is my question? Reaching out as I'm losing my mind on the emotional rollercoaster. Thanks!