Topics of Discussion
What can I expect?

wisdom from the Preemie-l e-mail group           http://home.vicnet.net.au/~garyh/preemie.htm

Anne offers, "I know the information about all the things that can go wrong can be overwhelming to new parents.   I have a 26 week little boy myself, he's now 4. He is a beautiful bright little boy and as healthy as a horse. He has a limp which is the consequence of a brain bleed but it's not a terrible thing at all. We are so glad to have him. There are many positive stories of preemie survival. These babies can be very strong and resilient despite their size. And even when there are serious medical issues, like Vincent's brain bleed, you can still end up with the most beautiful child in the world. Caring for a very premature baby is a real challenge. The NICU period, of sitting by helplessly as you say, is mostly wretched. And we can, none of us, know exactly what the future holds. But it is, I believe, reasonable to hope that your baby will continue to grow and thrive, little by little,with some setbacks along the way.I can't say it's been an easy road for us. But Vincent continues to bring us tremendous happiness. He looks and behaves like any other four year old, except that he's our miracle."

Michelle agrees, "I have twin 26 weekers and one, with the exception of her BPD, is doing so wonderful. Her sister has a lot of issues she is dealing with but is still way above any expectations we could of had. Neither of them had a bleed. They both, in very different ways, had a hard NICU course. One was hospitalized for 3 months ...one for almost 4 1/2 months. They are 17 months old now. Cruising furniture, crawling, one taking steps, talking, and lots of "normal" things. The set backs we do have are so minute when you look at the big picture. I know alot of great success stories with micro preemies. I am currently pregnant and 30 weeks along. I am more afraid to give birth now then I would of been at 26/27 weeks. That probably sounds odd... just personal experience has made me weary. There are lots of information here that you can find upsetting. Its not always going to apply to your child though. Its important to learn all we can. It's more important though to enjoy each and every day with your child and make the best of your blessing."

Marcia chimes in, "I can remember too well all the horror of the premature birth & wondering what the future will be like. I have preemie triplets born at 26.5 weeks, that are now 18 months old. I can remember sitting in the NICU, tears streaming down my face, thinking that I would have to adjust to wheel chair races & severe handicaps instead of the children I wanted so badly. It didn't occur to me at the time that I would love them so much that some of the fears would be replaced by that love. My triplets are only 18 months old (15 months adjusted), so their true abilities aren't really know yet. However, they are mostly a joy & at this point are "just kids". They are all starting to take steps, drink from cups & fight like crazy!! One has a problem with textures of foods, but the other two eat better than my FT daughter did at this age. One of my triplets has not even been on an antibiotic since discharge from the hospital. The other 2 had each had one ear infection. They each have an endearing personality & laugh & play pretty appropriately for their age.They're even starting to talk! Their biggest problems have been kind of slow gross motor dev (but still within normal) & Emily still eats quite a bit of babyfood. If you look at all the problems we COULD have had by now, these things are not so bad. And, while I know this certainly isn't the end of potential problems, it is looking hopeful that they will be able to lead productive lives."

Andrea reflects, "Many of the discussions you might find are about conditions your son will hopefully never have. Some of the discussions might be something you are being faced with. But, just because the discussions that go on and that are really heavy issues doesn't mean they will always pertain to your child or every child that was born premature. They won't. And the people on this list on represent a fraction of all preemie parents out there.  As for a happy story, there are also lots of them out there. Mine happens to be one of them. My son was born at 23.5 weeks, and hit a low weight of 15 oz. He was in the NICU for 115 days, then released for surgery (weighing 4 lbs. 6 oz.) to repair a double inguinal hernia. He is now 6 years old and doing really well--perfect eyesight and hearing. His only "problem" is that he is small for his age, and his hamstrings are tight. He does not have CP. He is only about 44" tall and 35 lbs. Physically (gross motor skills) he is extremely active, strong as an ox, and very coordinated. Mentally he's ahead of kids his age--he's learning to read and spell, and write his numbers. He was slightly delayed on fine motor skills, but has now caught up this past year. (We held him in preschool one more year due to his fine motor skills, but he will start kindergarten in the fall.)  Please keep in mind though, that my son is actually an exception. He had less than a 5% chance of being this way. These statistics have improved for kids of his gestational age in the last 6 years. And, for your son, his odds are much better than my son's. Statistics can be very overwhelming and frightening, so keep in mind that they represent the group as a whole that was in the study. For every child that was counted in any given study, there were several that did better, and several that did worse. Keep your sights focused on your child, and watch him as he progresses through each obstacle. For each hurdle he crosses, you are one step closer to getting him home.
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