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The Fight for preemies....our story

Posted Nov 16 2009 8:15pm

Twelve years ago I had my first child...he was born at 34 weeks gestation...I thought THAT was early...he weighed 4 lbs 8 oz. My water broke at 29 weeks gestation...I was on complete bed rest for 5 weeks. I honestly didn't know what I was in for. I really wasn't too scared, the chances of survival were pretty good. But, when the day came to deliver him, I was scare...he was so small. He had to stay in the hospital for a week because he had to learn to feed...I remember crying my eyes out when I got home...I didn't have my baby with me like all other new moms. I remember walking out of the hospital, not sitting in a wheelchair like all other moms. I left my baby behind...Fast forward 12 years....

I've have had 7 more children since Tony...all of which were born between 34 and 35 weeks...all of which had to stay in the hospital for a week or longer because of their prematurity...each one of those times, I've had to walk out of the hospital empty handed only to call the NICU every hour to check up on how my baby was doing, how much they ate. Did they d-sat at all? Any apnea episodes? Those are the questions that always seemed to come from my mouth followed by, "thank you for taking care of my baby. Please give 'em a big kiss from me." Oh those days...I thought would never end. Having a baby at 34-35 weeks gestation seemed so hard. Coming home on apnea monitors, taking baby CPR classes, and oh, lets not forget the car seat challenges!

Those days seemed so hard, like I said, until I had my twins at 23 weeks gestation. From the very begin I had problems...it was actually 3 years ago on Thanksgiving that I took a pregnancy test and it was positive...only 6 days past ovulation...How was that....it was too soon to get a positive on a pregnancy test...I felt morning sickness right away...I mean, BAM...instantly pregnant...then, on Christmas morning, I started bleeding really bad...now, mind you, I just had a miscarriage 3 months prior to this, so having a miscarriage was still fresh in my mind. I just knew that I was having one...I just new it...I called my doctor up and told him that I was having another miscarriage, could I come in for an ultrasound to see what was going on. I got in the next day...I was fine. I convinced myself that everything was fine...even if there was no baby in there...well...to my surprise and my husbands...there were 2 babies in there! The bleeding was a blood clot and I was to take it easy...WOW.

So the story continued...I was getting bigger, bleeding on and off but praying to God and anyone else who would listen to keep my babies safe and alive. I talked to my twins every chance I got...Kenny was on my right, Nick was on my left. On one of my appts....my doctor checked me because I was feeling weird...I was dilating...I was put in the hospital on bed rest...until I had my twins. I honestly thought I was going to make it. I thought that my babies would be fine and that I would be having them at about 28-29 weeks...boy was I wrong. My perfect plan to be a mommy to twins totally backfired on my. How could this happen? I tried to stay in bed as much as possible...I just don't understand why this had to happen to me and my babies.

Well I had them by c-section...Kenny at 10:29 and Nick at 10:30...both weighing 1 lb. 7 oz...and just under 12" long....OMG were they small! I didn't know how to act...should I be happy? Should I cry? I didn't know what to feel...I felt numb. My babies that I tried to keep in were gone. Alive, but gone. I couldn't protect them any longer. Now it was up to the doctors, NICU nurses, modern technology and most of all, God. I don't remember too much except going to see them in the NICU with my best friend, Denise. I cried and cried. They looked too small to survive. How were they going to do this? I felt guilty for not being able to hold them inside of my womb...what kind of mommy was I? I felt anger that all those weeks, months of praying and begging God to let me have healthy twins, failed. How surreal it was...sitting in a wheelchair looking at 2 tiny babies that almost looked like fetuses. Their eyes and ears were still fused. Their skin was red and thin...

but I loved them so much. I was so scared for them...I honestly felt like throwing up because of how scared I was about being happy...I wanted so badly to be happy that I had just given birth to twins...but not at 23 weeks. Their chance of survival was under 10%. All the tubes, needles, meds, vents, settings and monitors...all that was for my babies...my twins.

2 days later, our son, Nick passed away. He fought so hard. His little body just couldn't fight any longer. We held him, comforted him as he was passing...the hardest thing in my life. I never want to feel that pain again. It's worse than anything you can ever imagine. It changed me. I am constantly scared that something bad will happen to one of my kids, or my nieces & nephews...I hate feeling this way. I have a hole in my life that will never be filled. Its a sadness that only parents that have lost a child feel...a piece of you is gone that you want back so badly...oh, so badly...

So as we had to get through losing Nick, we were praying and coping with setback after setback from Kenny. It would be one step ahead and 2 steps back. There were infections, blood/platelet

transfusions, heart surgeries, scans, collapsed lungs, eye surgeries...the list went on and on...each day was something new...so, instead of a week in the hospital, like all my other kids...Kenny's hospital stay was 129 days! He pulled through everything with flying colors...that is...until he started to get older. He has developmental delays, Bilateral moderate/severe hearing loss, reflux, muscle issues, is just now starting to walk, doesn't talk, cant eat solids, has chronic lung disease which requires breathing treatments daily, his eyes are starting to cross more and more now and goes to several different therapies and specialist every week...

The NICU was hard, but these days, we just want him to be healthy. He has touched so many people with his ability to fight to survive...I love him for being here and for being such a fighter. I don't know what the years ahead will be like for him, but with love and determination along with his big, loud family and his angel twin...we'll make it special and perfect. Go d gave me preemies for a reason...our love will help them grow and be strong...all of them!

So this is why I am blogging today...This month is National Premature Awareness Month! Premature birth is a health crisis that jeopardizes the lives and health of nearly half-million babies each year. It is the #1 killer of newborns and can lead to lifelong disabilities. Worse: the number has increased 31 percent since 1981. It can happen without warning and for no known reason. Until we have more answers, anyone’s baby, could be born too soon. Medical advances give even the tiniest babies a chance of survival, yet for many babies premature birth is still a life or death condition. It’s the #1 cause of death during the first month of life. And babies who survive face serious health challenges and risk lifelong disabilities. The rate of premature birth has never been higher. In half the cases, we simply don’t understand what went wrong. We need to fight for answers. And, ultimately, preventions. November 17 is dedicated to raising awareness of the crisis of premature birth.
From This (at just a few weeks after he was born...down to around 1 lb)
to trying his hardest to walk! God is so good!


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