Tuesday...

Caroline had an ultrasound on her brain this morning to look for bleeding and we discovered nothing - yeah! She will meet with a pediatric ophthalmologist tomorrow afternoon to look at her optic nerve. If it is small it could mean that she might have vision problems (moderate to severe) or other issues related to her pituitary gland. The MRI has also been scheduled and we are hoping to have it done sometime tomorrow. The MRI will look at her pituitary gland to check for abnormalities. There are some hormones that cannot be checked out until later in her life - growth hormones, sex hormones and prolactin.

We met with the pediatric endocrinologist again today who said that diabetes insipidus is something that only 1 in 100,000 people have. He said that he sees about 50 pediatric patients in his office with this problem. Caroline will need to take hormone pills twice a day when she is older (I will give her liquid meds as a baby) to moderate her urine output and her sodium levels. Unmedicated, most people with DI cannot go two hours with drinking lots of water - the doc said it would be typical for people with DI to drink a gallon or two of water a day and if they lost access to clean water they would even drink from a puddle or ditch! With the hormone pills Caroline will live a perfectly normal life. (I think she'll have to wear a medical ID bracelet but I've already decided that it will be of the Tiffany's variety!)

With caffeine now at the perfect level, Caroline is not having any more apneac episodes. She did have some brady's overnight and early this morning (and one a few minutes ago) but none of them were severe. Yesterday she spent most of the day awake - looking all around her and relaxing. It was the first day in a while that she was out of the jaundice lights and without her mask. Today she has been a sleepyhead but looks healthy and peaceful. I am sure she is tired of having people poke her and mess with her constantly. We have asked to keep the lights dim and her eyes and ears somewhat shielded from the lights and noise in here. Once she is at the point where labs aren't needed all the time she might (fingers crossed) be moved into a cozy isolettte where she can live and grow in relative silence and darkness. There is a lot of information on Developmental Care for Preemies that points to the importance of maintaining a calm environment (similar to the womb) for these babies to continue growing. 

Day 10

Our nurse for 5 days, Jodi.