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...
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 miss my Nick every day. The pain is as strong as it was the day it happened. But, I also have to remember that there is nothing I can do, think or say to bring him back. I just want to keep his memory alive. I want everyone to know that my husband and I have 8 children...not including my 2 miscarriages...that we are the parents to a set of spontaneous twins...just one is in Heaven. I was blessed to be able to carry twins...even though it was only 23 weeks, I am one of the few that knows what having 2 babies inside you feel like. I will cherish those memories for eternity! I also feel very blessed to have as many kids as I have. Having a Bicornuate uterus, I was told that I was lucky that I had one baby, let alone as many as I had AND a set of twins thrown in!!! My pregnancies were not very good...none of them. All my babies were born early. My first, my water broke at 29 weeks but I was able to keep him in to 34 weeks...in the hospital! My husband would come to the hospital every evening after work and just sit with me...for 5 weeks! Then my second, third, forth and fifth...I was on and off bed rest throughout the pregnancies only to deliver again at 34 weeks. But I am thankful that they are here...heck, Sydnie and Kayleigh both had true knots in their cords...I have a picture of Kayleighs, but its pretty gross! LOL. So I am lucky that I didn't lose 3 babies! Then came the twins at 23 weeks and Gina blessed us with the most healthy of pregnancies and I had her at 36 weeks! So I have a lot to be thankful for. Yes, we are facing a rough road. Our married life has had it's ups and downs, tested through the years with births, miscarriages, hospital stays, financial woes, etc... but after all that Tony and I have gone through together, It has made us closer as a couple. Raising 7 kids on top of mourning the loss of a child is very hard, but we are handling it. I have hit my lowest these last couple of weeks. I've been tested, and felt like I've failed. I silently vowed to myself, my family and God, that I would start thinking more positive (now if only my kids would start listening to me! LOL!). So, there you have it.
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!