Introduction

*Joyce Worsley TRS 396-5440 (jworsle@epfl2.epflbalto.org)
Fri, 15 Mar 1996 15:21:16 -0500 (EST)


Hello to all! My name is Joyce and I am the proud Mom of two NICU 
graduates, Justice and Destiny, born 01/19/93 but due 04/30/93. Justice 
was born first, vaginally and weighed in at 2lbs3oz. Destiny backed out 
at the last minute and became an emergency C-section 20 minutes later, 
weighing in at 1lb 15 oz. The first time I saw them I was groggy and 
pretty much out of it but to me they were just the most perfect and 
beautiful little things I had ever seen. Later, when the drugs wore off 
and reality set in, I couldn't begin to imagine how such tiny fragile 
beings could possibly survive. If I'd only known then what I know now!
I had no idea of what was involved in trying to keep a baby (fetus!) that 
young alive. I was ignorant enough to think that growing in the incubator 
would be enough. It didn't take long to find out about apnea, NEC, 
bradycardia, vents, lines,etc. etc. 
Destiny had the smoother ride so typical of little girls. Justice had an 
abundance of set-backs and was on the vent for 15 weeks. The bout with 
NEC and the longterm TPN caused some liver problems and real jaundice. He 
was followed for the first two years by a GI specialist and did 
eventually grow out of the jaundice and fat absorption problems.
Des came home after 13 weeks and Justice followed 4 weeks later. Both 
were on apnea monitors which never seemed to go off *unless* I closed my 
eyes for a minute!
Physically they are both big  and very bouncing 3 year olds. Justice has 
severe developmental delays involving speech and language (dx PDD) but 
Destiny is right on target in all areas. All the "experts" assure me that 
the prematurity has nothing to do with the PDD but I am not convinced.
While the children were in the NICU, I struck up friendships with a 
couple of women in the breast-pumping room. If not for their camaraderie 
and support, that whole hellish experience would have been even worse (is 
that possible?) Otherwise, the hospital did not have any kind of support 
group, which to this day I think is a major shortcoming. Also rooming in 
preemie moms with full-term deliverers is nothing short of sadistic.
So that's my story , for anyone who's managed to hang in there so far.
I am a single mom, too, but that's a whole other long story! I look 
forward to meeting and hearing other preemie folk. 
Peace,
Joyce- Justice and Destiny's Mama   jworsle@epfl2.epflbalto.org