p.s. I got some great information from the satewide director of the MOD of research being done that does explore some new theories of premature birth. Email me or comment if you;d like me to forward them to you.
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God, Grant me the serenity to accept the things I cannot change, courage to change the things I can, and the wisdom to know the difference.
Our story
After 5 months of a healthy pregnancy with spontaneous twins, we found out at 23 weeks and 2 days gestation something was terribly wrong. For reasons still unknown, I was in preterm labor, 3 cms dilated and my membranes with baby A were funneling out of my cervix. I lasted only 3 days on bedrest with meds in the hospital, and on September 29, 2006, Serena and Edwin, Jr were born at only 23 weeks 5 days gestation. They weighed 1lb 3oz and were 12" long. They were in the NICU for 122 days and we encountered some of the most frightening times of our lives. We nearly lost Edwin many times, and it is truly a miracle that both survived.
Serena and Edwin, Jr are amazing and show us every day just how precious life is and how amazing it can be. We are humbled by the support and love we have found since entering this world of prematurity.
Currently, our preemie "struggles" involve Edwin's hypotonic cerebral palsy and need for a reverse walker and AFOs, Serena's paralyzed vocal cord, and their continued oxygen needs while sick.
We are passionate about issues related to prematurity and about sharing the very special lives of two amazing children.
I am first and foremost a mom, who works with "at-risk" youth in after-school settings. I am currently pursuing a masters in school counseling. Edwin, Sr is a professional boxer with a record of 10-0 with 7KOs. My email address is rapa.stephanie@gmail.com
Serena and Edwin, Jr are amazing and show us every day just how precious life is and how amazing it can be. We are humbled by the support and love we have found since entering this world of prematurity.
Currently, our preemie "struggles" involve Edwin's hypotonic cerebral palsy and need for a reverse walker and AFOs, Serena's paralyzed vocal cord, and their continued oxygen needs while sick.
We are passionate about issues related to prematurity and about sharing the very special lives of two amazing children.
I am first and foremost a mom, who works with "at-risk" youth in after-school settings. I am currently pursuing a masters in school counseling. Edwin, Sr is a professional boxer with a record of 10-0 with 7KOs. My email address is rapa.stephanie@gmail.com
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- 2nd try at this
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September
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Other amazing preemies and their parents who inspire us!
- Adam and Andrew
- Aiden
- Aiden (beautiful in my eyes)
- Alicia
- Amelia
- Arianna
- Asher and ^Jacob^
- Ashton
- Beau
- Bennett
- Bjorn
- Bryce
- Caitlin
- Caitlyn
- Carson and Elias
- Cole
- Collin and Cyrus
- Conner and ^Braedon^
- Cooper and ^Logan^
- Coy
- Dakota
- Daniel
- Eleanor and Adam
- Eliza Grace
- Elizabeth
- Emery
- Evan
- Fletcher
- Halle Grace
- Hallie and ^Olivia^
- Holland and Eden
- Isaac and ^Rachel Grace^
- Jordan
- Kaitlyn
- Kellar
- Kinnick and Carver
- Kyle
- Landon and Isabella
- Lena and Kassie
- Lincoln
- Lucas
- Lyndsey and Sydney
- Michael
- Miracle Boy (John)
- Monkeys (Margaret and William)
- Natalie
- Nate and ^Noah^
- Nina
- Noah
- Olivia and ^Logan^
- Olivia and Avery
- Paige, Cole, and ^Kaylee^ Chasing babies
- Riley and Ross
- Ryn Tales (Ellie)
- Sammy
- Shoshanna
- Sydney
- Taylor and Alivya
- Terrible Palsy (Moo)
- The Guinn Triplets
- Three good eggs
- Tristan
- Tyler
- Tyler and his amazing Mommy, Kelly
5 comments:
Definitely forward them on. Our biggest fear is that we'll go through this again...
What little angels!
I just read the previous post and wanted to remind you that March of Dimes also works on research like surfactant and other ways to help preemie babies survive. I don't really know why Taylor's water broke at 20 weeks either, but I am sure glad that research into surfactant had been done, with out it, no Taylor or Alivya, or any of the babies that I have gotten to know.
Also, Taylor would not have survived his first night or the following eight without research supporting the use of nitrous oxide. The doctor told me the night of their untimely birth that Taylor was sating only 50-60% on 100% oxygen on the Oscilating vent (another great product of MOD research). He told me that Taylor was being given a combination of oxygen and nitrous oxide, a "very experimental" new therapy. He told me that without it, he had NO other options. Later I found out that it had never been done on a child less than 30 weeks. This is why I support MOD. The research that they were doing, saved my son, and the research that they had done also saved my daughter.
I would like to have assurances that this would never happen to another child, but that requires a level of understanding of nature that we do not yet possess. I am content knowing that research continues that helps improve the lives of our miracles that do suffer this unfortunate circumstance.
Could you please forward it on to me. Like Abby, I have a fear of delivering early again. Thanks!
Shannon
Please, to me as well. My fears are the same...
The MOD likes to take alot of credit for things they didn't do... surfactant being one of them. The medical community made expansive headway on surfactant prior to the MOD stepping in with grants toward research... my brother received surfactant in 1980.
The MOD hasn't done anything considered earth shattering in years. They have given a 'face' to prematurity all the while making the mothers feel like they did something wrong.
I'm nearly 30 and my mother has been dealing with this stigma since I was born - all a result of MOD campaigns - why are they still doing that now?
Ever asked the MOD for help with your preemie? Ever seen anything in the media from the MOD that tries to spread compassion for families dealing with prematurity? Ever wonder why the vast majority of state ambassadors aren't the ones on ventilators or in wheelchairs?
When we were in the NICU the only thing we ever got from the MOD was a letter in the mail for a scrapbooking night in one of the family rooms. Cause everyone with a preemie in the NICU has time to sit down and scrapbook photos... I laughed. That was it. I remember even calling the NICU rep asking for research on breastfeeding a preemie. She left a message on my machine saying: "The MOD does not have any information on breastfeeding your preemie. Best of luck with formula". Hmm...
30 years have gone by since I was born prematurely... my husband and I are trying again, yet when I saw my OB for a pre-conception visit I was told to expect the SAME protocol my mother had (we both delivered for the same reason, unexplained PTL), which is close monitoring and months of bedrest - both of which aren't proven to improve outcome. How is it that in 30 years there isn't anything new? Where is the money that these families raise, in the name of the MOD, going? All I ever see are media campaigns blaming mothers.
Its interesting to see they're taking a new spin though - targeting government directly to sponsor legislation with a goal to prevent prematurity... I'll be interested to see were that leads. Fortunately its the medical community, with small help from the MOD (grants for research) that has made headway in the 'fight against prematurity' and I know they're still working toward it.
I'm interested to know why you aren't just posting what the MOD director told you? I'm quite sure from my many letters/correspondence with various MOD folks that the information is exactly the same as what I got from my OB/Peri... nada.
I don't mean to sound snippy but it is very frustrating that the only 'face of prematurity' bites the hand that feeds it... mothers raise money for them only to be told 'you caused this'. Add to that the fact that they offer zero support/compassion.
I wish the best to your cousin and his wife - I hope that their NICU rollercoaster is as smooth as possible. Their girls are just precious!
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