I wonder how much the doctors have not told us about what is going to happen to Kenny. KWIM? He is constantly sick, developmentally delayed, sensoritory issues, the hearing loss, eating issues, muscle tone problems and now the possibility of braces because of his muscle tone in his legs...I have been wondering, in the back of my mind, if it was right doing everything humanly and medically possible to keep him alive in the NICU...when the government knows that babies born under a certain weight automatically gets disability. Do doctors know the long range outcome of our micro preemies?There are study after study showing the different things that face micro preemies...Autism, mental problems...its all very scary to me...I read those, and think, "what the heck did I do to my Kenny?" The guilt is overwhelming. Us as parents want only the best for our kids, that means from health to success...and we would do EVERYTHING to protect our babies. But, are we being selfish in wanting our 1 pound babies to survive? To me, the answer is yes, I am/was very selfish. I wanted my babies, both of them, and nothing was going to change my mind.
Except one thing...or should I say, someone...
God
He chose to take Nick and leave Kenny. Why? I am not sure. but, I look at his beautiful face and see him kissing Gina and laughing and smiling all the time. I see how much progress he has made since those scary days in the NICU near the brink of death. I see how many people his (and Nicks) lives have touched and also see all the people that we got to meet and befriend from them, and I feel we made the totally right decision to keep him alive and here with us. I just wish, hope and pray that he leads a normal, happy, productive, healthy and successfully long life...just as I do with all my kids.
So for all those new mommies and daddies who have just entered this nightmare of having a micro preemie, please don't give up hope. It's very scary but well worth it. You will get a mixed bag of reactions from people...from extreme generosity to completely ignoring that they (your baby) even exists...trust us...we know. The NICU is such a loving and caring place...trust your instincts...if your baby isn't acting right or looking right...say something. And know that the nurses and doctors there are only human. They will do everything they can, but in the long run..its up to God. Try to have faith, it's hard, but you have to in order to survive.
I am trying to think better thoughts. Trying to not to question the past or the future, but to stick with today.
I am still very scared of what the future has in store, but with my husband, my kids and my memories, I will try to make the best out of everyday I have on this earth.
God...now I need a vacation!
So all of you that read my blog or even just click on it...
PLEASE SIGN THE EXTREME MAKEOVER HOME EDITION PETITION!!!
Our family could really use the help...plus it would make one heck of a tear-jerker story!
it seemed to have slowed down in signatures...Pass it on to everyone you know...and make sure you tell those to pass it on! LOL!
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