March 3, 2009

Yesterday, the Neonatologist ordered some consults from specialists, so they should be coming in this week.

Today was a busy day! Demetri weighs 890 grams (1 lb 15 oz). He is still working on increasing his feedings. We are actually using a bottle now and he is taking up to 8 ml of breast milk every 3 hours.

The Cardiologist came today to do an Echocardiogram. It looked essentially normal. He may have a bicuspid aortic valve, like Christopher. They will re-evaluate it in about 1 month.

The Geneticist also came today as Mom was being discharged to go home. He does not think that Demetri has Cornelia de Lange syndrome, as the Neonatologist had thought. He thinks Demetri may have Nager Syndrome, which is characterized by lower jaw and limb anomalies. He does have a small lower jaw and is missing the 4th digit on his left hand. Both of these can be surgically correctable. So this diagnosis was good news. Christopher and I are are very optimistic.

The Orthopedist also came tonight and thinks Demetri has good movement of all of his fingers on his left hand and a good grasp! He wants to see him at 3-4 months of age for x-rays and then will send us to a specialist for surgical evaluation at about 12-18 months of age. He thinks they should be able to close the cleft in his hand and save his little finger. He recommended doing massage to his forearm and fingers daily.