We are very happy to announce the arrival of Charles Luke "Charlie", he made his debut on Christmas Eve! Weighing in at 4lbs 13oz and 18" long.
He had issues in the beginning with regulating his temperature and blood sugar but nothing compared to what they were expecting. His breathing is good. He has some apnea issues because of his receded chin. It causes his tongue to fall back into his mouth occluding his airway. He has more pronounced gingival hyperplasia than Amber did as a newborn, which makes feeding a little difficult but he is not showing any signs of aspiration! He is already up to 6lbs 4oz at 5 weeks! His echo at birth was very good, his only issues is his heart squeezes on the lower end of normal. He will have a repeat echo at the end of this month. He is already showing corneal clouding especially in his right eye, Amber's did not start clouding until she was 8 months. He also had the same brittle bones/low vitamin D problems that Amber had from birth. The major difference between the two of them is their muscle tone. Amber has always had severe low muscle tone and because Charlie moved less inutero we were really concerned about his. He however has high muscle tone! Meaning he can already lift his head when you hold him against your chest! The problem is he holds his appendages in very tightly against himself, especially his legs. This could cause contractures later on. On that note he currently has no contractures! He also does not have as severe/prominent of a chest shape as Amber did, it is narrow though.
At birth Charlie was not really showing signs of being as severe as Amber was or really many signs of having I-Cell. Gradually over his first month we've discovered the high tone, bone issues, more pronounced cornea clouding and now liver enlargement. It will be interesting to see if his heart has changed as well. We are also still waiting for all of the genetic testing to come back to see his enzyme levels etc.. There was some talk when he was born about redoing the test to see if he had I-Cell but now that he is showing more features there is definitely no question that he has it and I don't believe we will.
He only stayed in the NICU for 5 days and is in a regular car seat!
He loved snuggling his I.V. board, it was so cute!
Except for his hands and feet he has very petite features!
Having him in the NICU was a good choice health/help wise but for me it was not easy. My room was 4 floors above him when we were in the hospital. Once I was discharge traveling back and forth was heartbreaking. Amber didn't like us leaving and leaving Charlie was so hard.
He is a very sweet baby and loves to be held and snuggled all the time! When he is awake he is very alert and makes the cutest faces. He's not quiet all the time though he's got a pretty good set of lungs and upsets more easily than his sister did.
Amber loves him dearly it is so sweet to watch. When he cries she will talk to him in a very high sweet voice or try and pat his head. Although sometimes she mimics his cry or laughs at him! She insists on kissing him good night first every night. She also has to have "Charlie time" every day, where she gets to "play" with him on her blanket. She already tries to say Charlie and lights up every time he's near her. I'm not sure Charlie is always too thrilled about how much she loves on him, she's not always gentle!