May 20, 2010

OK...today was a family meeting with the Doctors and nurses and there was lots to talk about...

For starters, both babies are now on a fortifier when using the Simply Thick/"source" mixture due to the Simply Thick not having as many calories as just the "source" milk on its own. When they are being tube fed, they will have oil added to help with the weight gain.

Will - his brain scan results showed his clots were going down (yay!) and the ventricle size was unchanged...meaning no swelling (yay!). There was definitely a noticeable area of prominent brain cell loss - commonly an indicator of some sort of learning complication on down the road (for example, ADHD or just being a bit slower to grasp a concept). The full impact, if any, will likely be unnoticed for years to come...and the brain does sometimes have a way of circumventing cell loss within this area.
Will is also infamous for being awake 5 to 6 hours at a time and will then be absolutely zonked out...so much so that he doesn't even wake up with cold water on his face. So, when he is awake, they will let him eat however much he wants whenever he wants. They will then let him sleep for up to 5 hours. If after 5 hours, he won't wake up to eat, then he will be fed via feeding tube.

Tenley - her reflux and congestion are still pretty big concerns. After she eats, she coughs and bubbles up at the mouth. With the "source" milk alone, she will completely turn blue...absolutely frightening mommy and daddy. The game plan as it stands now...they are going to put her feeding tube in past her stomach for a week to see if the reflux symptoms still occur. Every feed for the next week will be through this feeding tube. After a week, they will move it back to the normal spot and also insert a PH probe for 24 hours to register when/if the reflux happens and the PH levels. If it is found to be reflux, then she will likely need surgery.

So, it doesn't sound like anyone is going anywhere for the next few weeks. As Uncle J said..."it's nice of Tenley and Will to keep coming up with stuff so they can stay along-side each other this whole time."