Today we finally went to visit the Ear, Nose, and Throat doctor. I am confused why Averi wasn’t referred to them when she was discharged from the hospital since small sinuses and ear canals are associated with Downs Syndrome and she failed her right ear hearing test. But what do I know? The point is that we got there.
They looked at her ears and said that we just needed to follow-up with audiology to have her hearing retested later. I then explained to them about her possible tracheal malasia (softness in her breathing pipe) and that she makes noises when she breathes and has excessive trouble when she refluxes.
The only way to diagnose this problem for sure was for them to do a scope of her throat. After I explain that she had to be resuscitated twice in the NICU when they tried to put something down her throat, the resident went to get the attending. They decided that since her heart surgery was in two days, they would do the scope then, while she was under anesthesia.
After that appointment we went to visit the Neonatologist. Averi weighed in at a whopping 9 lbs. 7 oz. They said we really need to make sure Averi is stimulated orally or she will refuse food when she gets older. We are now dipping her binky in milk and letting her suck on it while she gets her feeds. They also said they would schedule another swallow study in October so that we could see if she can possibly handle any solids.