Tuesday, November 30, 2010

Canceled again....

Well we had surgery rescheduled for Thursday but we met with the surgeon yesterday and had to cancel it because Nick still has thrush, even after more than 14 days of treatment. Poor baby, it's so frustrating because I feel like I am doing everything I can but it's not helping. I give him his medicine, wash and boil his bottles/nipples/pacifiers twice a day and he's still not eating as much as he should be either. He lost 2 ounces from last week, yesterday he weighed 11 lbs 4 oz. He barely eats 3 ounces at a feeding, sometimes less, and he takes a very long time. They tell us to limit his feeding time to 30 minutes because after that he starts burning more calories than he is taking in. At least he is not screaming his head off halfway into the feeding and he is eating more than he was 2 weeks ago, but it's just not enough.
Our surgeon will meet with us again in two weeks and if he is still not better we will probably completely cancel the lip adhesion surgery and just do the formal lip procedure at 6 months. I am not completely upset about canceling surgery again because I really don't want to see Nick go through any more pain than he has been, but I know it will ultimately be the best thing for him.
We also met with Dr. Artinger in genetics last week. His initial testing for Lenz micropthalmia syndrome was negative. Now they are testing for CHARGE syndrome. It's an acronym: C for coloboma of the eye, H for heart defects, A for atresia of the nasal choanea, R for retardation of growth and/or development, G for genital and/or urinary abnormalities, E for ear abnormalities and/or deafness. We should know the results in 3-5 weeks.
Regardless of everything Nick has to deal with, he is happy, he smiles a lot and sometimes makes a cooing sound. He tries to reach out and bat at toys and loves to be held and cuddled.
We meet with CCVI, the Children's Center for the Visually Impaired today, they will try and determine what his functional vision is and hopefully give us some tools to help him see and learn the best he can.

Thank you for your prayers, please continue to pray that Nick's thrush will go away and that he will start eating more and plumping up :o)

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