Topics of Discussion
wisdom from the Preemie-l e-mail group http://home.vicnet.net.au/~garyh/preemie.htm
|Sue asks, "I just
subscribed to this list last night. Last week I gave birth to a 26-week son, Daron, 935
grams, and so far he is doing exceptionally well. I know it's too early to know what
problems he may have in the future. I'm just happy he is alive and breathing on his own.
Everyone is impressed with his responses in NICU and he has a tremendous prayer covering
so I, up until now, I haven't been too scared. Overwhelmed, yes, but scared -- I
just believe that this is God's baby and we can never know how long we will be entrusted
with the privilege of caring for our children. However, after reading a day's worth of
posts, it would seem that everyone talks of multiple serious complications for all the
children mentioned. Is it possible to have a healthy or mostly-healthy 26-weeker? I never
knew I would love this baby so much and I feel so inadequate while sitting helplessly by
the isolette. In the last week I have poured over reams of material so I pretty much know
what can go wrong -- can anyone tell me of some positive stories? Is this realistic at
Helen answers, "Although studies indicate that the majority of preemies have ongoing problems, it is important to remember that often these problems are considered to be "mild" -- learning or behavior problems, for example, or vision problems correctable with glasses, and/or motor problems that may make them less than perfect athletes. These problems may not always seem mild to a parent or child struggling with them, but they do not necessarily rule out a successful, happy and independent life. But there are also children who emerge from this experience (even with some pretty bad risk factors) to be completely normal, and not only normal, but superkids, by anyone's definition. In The Premature Baby Book, there is a story of Steven and Timothy Laurie, identical male twins, about 1000 grams each and 26 or 27 weeks gestation (all big risk factors). These boys had very rocky neonatal courses. One of them had a near-miss SIDS after coming home.Yet today both boys are excellent students and getting ready to go off to good colleges. They are handsome, athletic, musically talented, Eagle Scouts, etc.Their NICU pictures were so gruesome that the editor at St. Martin's Press didn't want me to use them, but you should see those guys now and I have this year's Christmas card to prove it! Also in the book is the story of Rosie, who, when we went to press back in 1983, was not doing so well. She had mild CP, vision problems, and was in numerous therapies. Her mother was feeling pretty discouraged. Today Rosie is in college and studying to be a special ed teacher. She is six feet tall and an excellent basketball player. She was making straight A's, last I heard.There are many examples of teen or adult preemies who have escaped problems or done well in spite of problems who are right here on this list, on the preemie-child list and on the retinopathy list. "
Maren offers, "Please take the discussions on the list with a grain of salt, but not as "salt in your wounds"! We are (and you will be too, probably, down the line) hardened a bit by the preemie experience, in a good way though, and we sometimes throw around grim discussion topics without much hemming or hawing... which can make for a startling introduction, I am sure! But yes! There are wonderful happy stories of children who don't seem to have many, or any, long term effects from being early. And there are wonderful happy stories of children who do have long term effects and are happy loving children with great families and bright futures. It is all so relative. My son Gabe was born at 28 weeks, at 1 lb 6 oz. He spent 76 days in the NICU, 5 weeks on the vent, had numerous infections, pneumonia, PDA, blahblah blah....many things went wrong, many things went right, and he came home at 3 lbs and on oxygen. That week we took him to the creek so he could be in beauty, above, below, all around him (he slept through it all of course). He is a happy, healthy, almost 2 year old who learned to walk late, but great, is starting to talk, but shouting is more fun, has piercing blue eyes and a personality that makes an impression on people. We go hiking, camping, been to the ocean, lots of road trips, lots of fun, many tears, but all of it a journey that is worth it. Gabe has been rehospitalized twice for bronchiolitis due to BPD. But for 9 months he has been perfectly healthy! I'm beginning to feel we are finally leaving the preemie conditions behind, and now are facing the "normal" kid stuff. I can't believe it myself, but yes, this is finally starting to feel like we made it! I know you want images of "normalcy", because that has been your dream, and now you sit in the damn NICU with beeping and lights and tubes and IVs....not what you dreamed. And it can be so frightening, the unknown future of your child. Just try to remember that you don't know the future for any of your children, really, and that is OK, you just love them and hope for happiness and joy.Also keep in mind when reading, that there are 27 weekers who do better than 30 weekers, and 23 weekers who have done better than that! No matter what gestational age or birth weight, there are exceptions to the rules and data. I think I have finally stopped comparing Gabe to every other 28 weeker or child born at 1 lb 6 oz. I made myself crazy trying to fit him into some category of wellness or "miracleness". I think I'm done making my self crazy over comparing. Every child is a miracle, and each is going to go through the preemie thing differently. Try to not compare to "other 26 weekers". And I'm not denying that there is some scary data out there about long-term results and agree that you are probably better off knowing the facts and the reality. But don't limit yourself or your son to that. Have faith in him."
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