Yes, that's right...I've been thinking...
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 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!
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 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!
12 comments:
I'm glad I found your blog! You brought tears to my eyes. Just when I'm thinking I can't do it I hear a story like this that just humbles me to the floor. I have twins too. But we didn't have any problems. Believe me, I can't even imagine. How do I sign to get you a home makeover?
Sharla,
you know...you just have to keep going...I am so glad I have my Kenny and the rest of the kids, because if I didn't, I don't think I would be able to even function.
I am just very thankful to God that he gave me the chance to have twins, to know what it feels like to carry twins...even if I didn't get to bring both home, I feel very blessed and thankful that God gave them to me...along with the rest of my beautiful children! I still have my days...all the time...but I am trying to be more positive with my thinking. LOL
Thank you for reading my blog and also for signing the petition!
This is the best blog entry i've read in a long time michele!
Love you!!
xoxoxo
Thanks Jeannine.
Hi Michele,
I wanted to thank you for the very nice comment you left for me on my inspirational blog. It really does my heart good to hear from the ones who actually take the time to read the inspirationals that I post and then leave a comment telling of their thoughts or feelings. After reading your post about your children I must say it brought tears to my eyes. I'm truly terribly sorry for your loss. I couldn't even imagine having to go through something so devastating. I have a 16 year old Daughter who was diagnosed with Nephrotic Syndrome (chronic kidney disease) almost two years ago now, after being healthy her whole life. When she suddenly became very ill and then of course had to be hospitalized I thought at one point we were close to losing her because she began to have some heart problems on top of everything else that she was going through at the time. Thank the good Lord that did not happen. I could never have bared such a thing, and when I think I have it so bad dealing with my Kayla's illness everyday, I hear a story such as yours that makes me once again realize just how blessed and fortunate I really am. Thanks very much for making this post. I will be praying for you and your family, and just remember even at some of the most hardest times in our lives when we think things couldn't be or get any worse we have yet only come to another "bend in the road" and God will carry us and he will see us through.
God Bless you and yours~
You're right, it's all worth it. Anyone who thinks you shouldn't try to save such a small baby need to realize a couple things. One is that they may be at an increased risk of disability...a greatly increased risk...but it is not a guarantee. And, if they do end up with a disability, they still deserve their life. Plenty of babies born full term have disabilities. People with disabilities can lead wonderful lives. In fact a lot of times it seems they are way more positive and way more thankful for what they do have. I hope you get your home makeover!!!
Wow...thank you for taking time to visit my blog. I read your post, and my heart aches for you! I cannot imagine what you're going through. Hang in there and stay strong! Just "TRUST"...sometimes that's all we can do! He knows what's best, and everything happens for a reason...it just doesn't always make sense! ***hugs***
you left a comment with me (life in the slow lane)....not sure how you found me, as i rarely write anything, but it's quite the coincidence: i have a set of twins (girls) born at 31 weeks one of which was just 2lbs. we were lucky and had a relatively easy time in the nicu....my girls are 5 now and healthy and happy and smart as whips. my peanut is still tiny, only 31 lbs and apparently a candidate for growth hormones (don't get me started) since she is >3% for height. i am sorry for your loss, and for the struggles you are having, i truly know the pain of both. i'll be reading!
Michele,
I remember my very first miscarriage. It is something I will NEVER forget. The day I found out I was pregnant was February 14th and it was incredible. I started a journal for my baby that day. I wrote it in faithfully, sometimes twice a day.
Unfortunately it was an unfinished book to my unborn son or daughter because I had a "missed abortion" weeks later.
It is now 17 years later and I still have the journal. I am also blessed with two boys - ages 4 and 15. Through the years though I have had over 15 miscarriages, but I have 2 miracles I am SO THANKFUL for.
Keep your chin up.
Lisa
Mom of 2 Boys, Wife of 1
Wow. You must have a great deal of energy. Do you plan on having more children?
LOL! The energy comes from coffee!
And we plan on having at least 5 more! ***joking...BIG TIME***
I just wanted to say Thank You for making a site for something that is very important to me too. I also had twins at 27 weeks 5 years ago. Both survived, but one has cerebral palsy, feeding tube, chronic lung disease, and other medical problems. I also questioned myself for a long time, but after years of being with these perfect children I have accepted that this was supposed to be for our family. God has blessed us with these two(and our other two). Your son is beautiful and I'm sure his twin is his guardian angel. Thank you again.
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