Getting the fundraising in gear

This is the letter I'm sending out to everyone on our massive email list. Just wanted to post it here in case I missed someone.


Hello everyone,

As you know, on September 29, 2006 our lives changed forever. After a completely healthy pregnancy, and prenatal care beginning at only 5 weeks gestation, a routine internal ultrasound revealed that my pregnancy was in grave danger. For reasons still unknown, my cervix dialated prematurely, and after only 3 days in Labor and Delivery with medications to try and stop the labor, Serena and Edwin, Jr. were born 17 weeks too soon. They made the cut off of viability by only 3 days and 3 hours. In other words, had they been born only 3 days and 3 hours earlier, the hospital's policy would have been to do nothing...to allow us to hold them in our arms as they took their last breaths.
But even making the cut off did not ensure their survival. They almost didn't survive, and we were given the choice to discontinue treatment. It is difficult to understand just how close they came to not making it. Those who did physically witness the alarms, the IVs, the breathing tubes, the feeding tubes, got a glimpse of what our lives were like for 122 days.
There were heart surgeries for both 1 pound babies. Laser surgery for their eyes to prevent blindness that would have been inevitable without the surgery. Head scans to detect brain bleeds that could have been a death sentence or have meant severe mental and physical impairment in the future. Breathing treatments given to try and mature their very immature lungs. Lights to prevent damage to their livers. Ventilators that physically shook Edwin in order to keep him oxygenated. The list goes on and on.
There were "good" days and bad days. There were the days we watched modern medicine and respiratory therapists, doctors, and nurses literally bring them back to life. There were days we wondered if all this pain they were enduring was worth it. Were we making the right choices? There was the ever haunting words: "close to a zero percent chance of survival." There were the worries about cerebral palsy, blindness, deafness, mental impairments, chronic lung disease, severe asthma, behavior issues, difficulties in school. There was one thing that was certain, if they survived they would never escape the effects of their premature birth.
Once we brought them home, with their oxygen and monitors, we experienced the greatest joy. Beyond all expectations, they had both made it home. But our journey didn't end in the NICU; there were the follow up appointments to test their hearing. There were, and still are, the appointments to check their eye sight, their lungs, and their development. A cold has landed them in the Pediatric Intensive Care Unit. They receive monthly shots to protect them from a respiratory virus, that presents as a common cold in otherwise healthy individuals, called RSV that causes 125,000 children to be hospitalized and approximately 400 deaths in children under the age of one every year. We just found out Edwin had this, which caused our latest visit to the ER last week. Without the shot to protect him, he could have very well been hospitalized and put on a ventilator. He developed pneumonia in addition to the RSV. He still requires oxygen 24 hours a day, 7 days a week.
Serena has a paralyzed vocal cord which affects the way she swallows (we thicken feeds because she aspirates on thin liquids), affects the way she "talks", and affects her ability to breathe when asleep or sick. She has tracheomalasia, ("floppy" airway) as a result of being intubated which causes her to require oxygen while asleep, and a sharp increase in O2 when she is sick. She suffered an asthma attack while intubated during her bronchoscopy last week that could indicate severe asthma in her future.
There are the Early Intervention, Physical Therapy, and Occupational therapy appointments that take place every week. They will begin Speech Therapy in the spring. There are the worries about physical, cognitive, and social development. There are the worries and questions about school...will they be in mainstream classrooms, will they require an IEP, will we find a school that meets their needs?
There are hundreds of other worries as a result of being born so early, some of which include a higher incidence of autism, ADHD, mental health issues, respiratory problems, etc. etc. etc.
In spite of all they've been through, and the issues that may come up in their future, we are eternally grateful for Serena and Edwin, Jr., and truly blessed because they are doing amazing!
There are really no words to describe how heartbreaking and frightening it is to watch your child struggle to survive. There is no way to articulate how painful it is to have your pregnancy cut 17 weeks short, only to have your children undergo countless tests, procedures, and surgeries for four months. It makes it even harder when you know you did everything right, and yet your children came too early. And what does this mean for future pregnancies?

This is why I support the March of Dimes. Their mission statement:
"Our mission is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives. March of Dimes researchers, volunteers, educators, outreach workers and advocates work together to give all babies a fighting chance against the threats to their health: prematurity, birth defects, low birthweight."

As many as 1 in 8 babies is born prematurely. Premature birth is the leading cause of newborn death and many life long disabilities. This is not an epidemic that affects only impoverished people without prenatal care. This is not something that only happens to women who abuse drugs and alcohol in their pregnancy. This happened to me, this can happen to anyone. There is much research being done to figure out why women go into preterm labor, how to prevent it, and how to best treat babies who unfortunately are born too soon. A couple decades ago babies born at 23 weeks could not be saved. There was no treatment for babies with ROP, so their retinas detached and they became blind (Stevie Wonder is blind as a result of ROP.).A synthetic form of surfactant was developed through research funded by the March of Dimes and is one of the leading reasons that babies born as early as Serena and Edwin are able to be saved.
But prematurity doesn't always end with a NICU course and discharge. There are the babies who do not survive. There are babies who die as a result of premature birth every single day. I held Serena and Edwin's cousin in the palms of my hands and attended her funeral and burial. She was born too soon...she was born breathing, but there was nothing they could do; it was before the gestational age of resuscitation. The heartbreak of losing their baby will live with Edwin's brother and sister-in-law forever. No parent should ever have to bury their child.
There is nothing I can do about Serena and Edwin being born 17 weeks too soon, and there is nothing I can do to bring baby Keiry back, but what I can do is help raise money so that research can be done to ensure that all babies get their 40 weeks.
I know that everyone's lives are busy and money doesn't grow on trees for any of us. But if anyone is interested in donating to a very worthy cause, I'd ask that you support us in WalkAmerica 2008, Team Serena and Edwin, Jr. We walk in honor of Serena and Edwin, Jr. Rodriguez and in loving memory of Keiry Sarai Rodriguez. I'd also ask if anyone is interested in walking with us this April to please let us know. This is a cause obviously very close to my heart. I'd love to raise $400 for our first year, (this is something I plan to do every year for as long as I physically can.) Even if it's just $10 it would mean so much.

Our team website is:
http://www.marchforbabies.org/23wktwinsmommy

You can visit here to join our team (walk with us) and/or donate money.
If you know anyone who is interested in donating to worthy causes, please share our story and direct them to our website.
We walk in thanks to those who have walked before us and helped save Serena and Edwin's lives, and walk to support research that seeks to ensure that all babies will be born healthy.

WalkAmerica 2008 Worcester Walk
Event Information
4/20/2008, 10:00 AM
City Hall in Worcester
Corner of Franklin Street and Main St
Worcester, MA

Thank you!

Sincerely,

Stephanie,
Edwin, Sr.,
Serena,
Edwin, Jr.