Friday, September 21, 2012

Five pounder

James is officially a five pound baby! It seems like it has taken him forever to get to this point, especially with all of the challenges he's had with the bowel perforation, ileostomy, stomas, metabolic syndrome, dumping, and the struggle to find a good balance of nutrition. In fact, James's weight has taken off in the last few weeks - he gained a pound in just 12 days. This will really help him get off the ventilator. In fact, his oxygen requirements are currently at room air!

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We don't like to have emergencies in the NICU but on Tuesday night into Wednesday morning, James was having trouble keeping up his IV's. He sustained a burn on his foot from an IV that infiltrated, and was in desperate need of another option. Our primary nurses had been pushing for a Broviac line, which would have been in addition to the surgery on Tuesday but for some reason the decision was made against it. By Wednesday morning, this was James's only option for IV fluids and nutrition for the next few weeks. James went in for an emergency surgery to have a Broviac line placed on Wednesday afternoon; the surgery was a success and he has recovered well.

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In Maisie news, she is eating like a champ and sleeping well. We have a piano play mat that she adores, which sings songs back to her like "Little Bunny Foo Foo". We are trying not to go too crazy with the repetitive nature of these songs.

Maisie had her final eye exam today and doesn't have to follow up until six months from now. She is clear of Retinopathy of Prematurity!

Another interesting thing that Maisie has been diagnosed with, per say, is something called macroglossia. I had to look it up when I read it on her discharge papers. The definition is "congenitally enlarged tongue", and no one at PSL ever mentioned this to us but we are aware that Maisie has a very long tongue. She might very well turn out to be a rock and roll star! Otherwise, unless it starts impacting her ability to eat or breathe we are just going to wait for Maisie to grow into her tongue.

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