Roller Coasters Suck

5/31/2012

Heidi went into the NICU this morning to find Evalyn back on the oscillatory ventilator.  Sucker punch right to the gut.  We’ve made it pretty clear that we hate this machine.  We know it’s necessary and being used for good reason, but it’s such a visceral reminder of the precarious situation they are in.  Every time Evalyn moves onto that machine we have to acknowledge that she isn’t making progress.

The Hated Oscillatory Ventilator

I told the doctor that this doesn’t look like progress to me.  He replied “it doesn’t look like progress to us either” he went on to clarify that this is typical for babies at this gestational age.

Evalyn resting

The research trial has been rendered moot.  Because the girls have been on respirators for 2 weeks they want to start them both on the steroid right away.  Had they been entered in the trial there would have only been a 25% chance that they both would have received the steroids.  I could go on about how the FDA and medical community has become excessively rigid and narrow in their research methodologies, but that is a rant for a different time and audience.

The steroids are given over a 10 day course.  The doctor said they are typically able to take them off the respirator after 5-6 days into the treatment.

Lillian appeared to be making a little progress.  The amount of oxygen she required was down a bit, getting closer to room level, but she still requires a respirator to do some of the work for her.

Lillian aka "Lilli" enjoying her body pillow

On a lighter note I have been truncating the girls’ names to Evie and Lilly.  I found out that this is VERY wrong!  The proper abbreviations are Evy and Lilli I’ll try not to put my foot in that trap again.  In addition neither of the two shades of pink I have tried are right so I guess I’ll keep plugging away on that one.  I am also being pressured to add a cutsey background graphic to the blog.  I’m taking a stand on that.  Feel free to sound off in comments, but be warned I am just as capable of disregarding your input as Heidi’s.

Thanks for reading