Optimism...then emptiness.

Last night Lindsey and I were extremely pleased to get a call from the CHOP Feeding Clinic letting us know that they had a cancellation and could see Myla the following morning at 8:30. After a forty five minute drive south to the CHOP Specialty Care office in Voorhees, we met with a pediatrician, and nutritionist, an occupational therapist and a speech pathologist. We attempted to feed Myla via bottle, and she cried immediately when placed in the position for feeding. It was nothing we hadn't seen before, but we figured that we should show them and they would have some answers. Following the evaluation, the Nutritionist came back in the room and apologized for not having any answers and told us that they were not really sure what was going on. Children's Hospital of Pennsylvania is consistently ranked in the top 5 Children's hospital in the country. They have had no answers for us. Not since our first GI appointment there. It also appears that at times, that have a lack of interest in finding answers. For example, her cough, as persistent and painful as it is, we were told that as long as she is keeping down most of her feeds, we kind of just had to deal with it. They all should watch Myla has she coughs so hard, her breathing pauses, her face turns bright red and wretches. It is the worst sound in the world.

With every doctor's visit, Lindsey and I are hopeful. We tell Myla's story. They take a look. They may order a test that they state may not give us an answer, and then we leave. We leave empty. We leave heart-broken for our baby. We leave heart broken for our lives. We mourn what our life was like for the first month or so with Myla. The excitement, the elation, etc. Her smile brings that back, but then the cough brings the emptiness. We pre-mourn our future, thinking that this hurt, loss, and sadness isn't going anywhere any time soon. It takes its toll. Tomorrow we have her 3 month pediatrician's appointment then off to CHOP in Philly for her Barium Swallow Study. Its going to be interesting to see how they do a Barium Swallow Study with an infant that really hasn't swallowed much in 2 weeks. They are the experts.