Past Week's Activities

Guten Tag,

As I rapidly approach my Day Zero, or as I like to call it, my fashionably early entrance, I would like to fill you in on what has been happening in my life for the past week or so.  The past three weeks have been particularly irksome with low tolerance for more teaching and learning in the NICU.


Silly folks

I have continued to have these brady/apena/desat spells at the rate of about 1-4 a day.  There were some meals where many of these episodes occur, and others where I was pretty clear.  Thanks to Mom and Dad hanging in there, we talked to the doctor for quite a while on Friday afternoon to see if there wasn't something they could do to try something, anything different.

The Doctor recommended we try a test on Monday called a Videofluoroscopic Swallow Study or VFSS.   In a VFSS, I will swallow a variety of liquids and foods mixed with barium, as a radiologist takes video X-rays of the mouth and throat. These images show how food passes my mouth through my throat and into my esophagus. They may also reveal aspiration -- foreign matter entering the lungs -- if barium enters the windpipe  (So says the Mayo clinic)

Little did the Doctor know, but at the same time he was explaining all of this to Dad, I was actually having one of the more severe episodes I have had in weeks.  The total time it took to finally shake the series of Bradys was about 30 minutes (many little spells tied together, not continuous).  This is a long way of telling you that after this, the nurses and doctor decided to go ahead and thicken my feed with what they call Nectar.  ** As an aside, some of you might remember what Mom thought of the hospital thickening her diet while she was here for the High Risk Pregnancy.  Please see -- Unpleasant addition to today's lunch **

Since this decision was made at 5PM on Friday evening, I have been episode-free.  (Knock my little knuckles on wood)  I wake up starving every three hours, and it hasn't felt like defensive eating.  I eat this food which looks like runny pudding or a melted Wendy's Frosty.  It looks like many of my problems have been associated with the fluidity of the food I have been sucking down, so most of the time you will find me rooting around for more food, and my face looks like this:


Few times in my life do I not have my mouth open looking for more food.

As Mom and Dad left on this Mother's Day I wished them well, and hoped they could spring me sooner than later. I am now coming in at a cool 6 pounds 7 ounces, which is almost twice my original birth weight of 3 pounds 7 ounces. 


Momma keeping me on my left side to even out my head time :-)

Happy Mother's Day,
P-to-the-at-rick