Alexandra: 16 weeks old!

Hi everyone,

Alexandra continues to do very well. She has a few issues we still have to sort out, but here's the gist of where she stands:

Breathing

Her breathing continues to improve. She came off CPAP this week, and is now on something called hi-flow nasal cannula. This setup includes a plastic tube taped to her cheeks with prongs stuck in her nose. Everyone predicted she would find this more comfortable than the mask, but she doesn't like this either. However, the fact that she's on this says she's still keeping her lungs (and trachea) open on her own... this is a very big deal! We are slowly backing down on how much air flow she's getting, but so far so good!

Stomach

You may recall her stomach muscles grew too much, and two weeks ago she needed surgery to correct that. Since then she has been getting a continuous supply of milk into her stomach. If you think about it, babies normally get a whole bunch once every few hours ("bolus feeding"). She's getting that "whole bunch" spread out over time (continuous feeds). She has been vomiting and spitting up some, but it is very hard to tell if it is because of her original EA|TEF or if this is just normal baby stuff.

Sometime this week she is going for a "swallow study". This is essentially a moving x-ray that watches how her insides move liquids of varying consistencies down the throat and into the stomach. Hopefully everything goes to (and stays in) the stomach. If we see signs of the liquids going elsewhere, we'll have a new issue to deal with. If everything is okay, we can start to transition her to "bolus feeds" over a week or more. We have to get her stomach used to the higher volumes of liquid... So that she can take a bottle like a "regular" baby!

Once we know the results of the swallow study (and what the next step is), we'll let everyone know.

Personality

Alexandra continues to show us more of her personality. She really likes to smile despite all the stuff we do to her! She looks like she is going to be a very (VERY) determined girl. Personally, I think she's already figured out how to flash her eyes to keep your attention, but what do I know?! She's definitely a Daddy's girl.

Pictures

Two grandparents got to hold her for the first time this week... Check it out!