Tommy's CyberNursery Preemie Web has been in existence now for two years (now 22 years).
As I write this, Tommy is just shy of 2 years and 11 months old-and a little over 2-1/2 years corrected (although we only rarely consider his corrected age at this point). In about a month, Tommy will become a big brother.
Although small for his age, Tommy seems very much the normal 2-1/2 year old. Last month, he started sleeping in his "big boy bed". He is constantly surprising me with his speech which is becoming more and more conversational. "I can do it" is replacing "no" as a frequent uttering, even when his parents would prefer he didn't do it!
When Tommy was born, I had very little hope that we would ever get to this point. The NICU is such an unreal place, and the information on micro-preemies is so grim, that I just couldn't see beyond the horror of Tommy's early birth --15 weeks early at 1 pound 10 ounces.
I've learned a lot since then. Micro-preemies can have positive outcomes. Some of these babies will have little to no problems, a greater percentage than anyone likes will have minor disabilities, and some will have serious problems. However, even a child with disabilities can have a full life and can be considered a positive outcome!
I've also learned that babies born just 1 or 2 months early, or even at term, can have serious problems -- although the problems of these babies are wrongly dismissed, just as much as the negative outcomes of the micro-preemies are overly amplified.
The horror of an early birth is not just a matter of outcomes. It's a matter of a tiny baby who has lost the benefit of the ideal growing environment and will face challenges that most babies don't. It's a matter of losing a portion of the pregnancy, as well as that perfect television birth where the doctor asks for one last push, announces it's a boy or girl, and the camera fades out on mother, father and baby bonding for the first time. The fantasy moment is lost regardless of whether the baby is 15 weeks early, 10 weeks early, or even 4 weeks early.
It's difficult to understand the feeling of loss if you haven't been there. It's typical for well meaning acquaintances to tell the mother of the preemie how "they are lucky they didn't get so big and have to go through those last few months of pregnancy" or that "they are lucky they didn't have to deliver vaginally as it hurt like hell'.
Well, my wife is loving the third trimester of her current pregnancy. Although we are parents, she has never been this pregnant before and cherishes every day of it. She also cry's when she sees the television moment I described earlier, because she knows that's not what we had with Tommy, and that she will never deliver vaginally because the emergency that was his birth necessitated a classic c-section.
I'm seeing more resources appear for parents of preemies than I found when Tommy was born. There is a ton of information and support available on the Internet these days--which is great. When Tommy's Web site was started, there was next to nothing on preemies on the Internet and it was very difficult to find. These days, a subscription to the "preemie-l" e-mail discussion group gets you over 100 brand new messages a week from parents who either are there, or have been there!
-- Clark T. King, aka Dad
2017 note -- there are even more resources today than when I wrote this twenty years ago -- and Preemie-l still exists!