Hello all...I will update more about Keiry when we know more...
I just got a call from the ped's office about the application for synagis this RSV season. She said Edwin should definitely get it since he is still on O2, and I quickly reminded her that Serena is also...only when asleep b/c of her tracheal malasia, sub glottic stenosis, and paralyzed left vocal cord. The nurse needed my permission for the company to call and ask questions as they decide if the twins are eligible. They better be. It's not like I enjoy seeing them get a painful shot every month, rather I want them protected as much as possible.
So question...how long did your micro preemies get synagis? 1 year, 2 years, 3 more?
Thanks
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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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Other amazing preemies and their parents who inspire us!
- Adam and Andrew
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- Paige, Cole, and ^Kaylee^ Chasing babies
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- Terrible Palsy (Moo)
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- Tyler and his amazing Mommy, Kelly
8 comments:
We just went for our regular pulmonology follow up with a new pulmonologist... our original doc said that the twins would NOT need synagis this year since they would be 2 in the middle of the season... (and Alivya did have 1 shot during the first year since she came home in April) anyway, the new doc says absolutely yes Taylor should get it, and Alivya too... I am going to get a second opinion from their ped... But Edwin and Serena are just going into their second year, right? I would definitely do the second year. Technically, this is T and A's third year...
I may be too late for this, but as I was arranging my father's funeral this past April, I discovered that all of the funeral homes in our area do baby funerals at no charge... maybe something for you to pass on if there is still time. Hugs to you and your family! I have added little Keiry to my list, she won't be forgotten!
Nathan received the injections the first year he came home, 2004-2005. then he received them for the 2005-2006 season. Then he turned 2 on June 2006... they decided he did not need the injections although he had already had pneumonia once that year. He wound up with pneumonia 4x between April and Dec 2006 and they still wouldn't approve them. In Feb 2007 he stayed 8 days in the hospital with RSV and came back home on oxygen. And they won't approve them for him this year either...
See that's what I am afraid of. They better approve both kiddos and for next year too. They have cgronic lung disease for crying out loud, give them the shots for as long as they need it! Yes, this is only the 2nd year S&E are going into...there first full RSV season out of the hospital. They better both get approved or I am having their pulmonologist write a letter.
I am a NICU nurse and you should be approved this year that should be no problem. The problem is that they haven't done enough research on RSV once a child turns 2. So at that point they don't consider them at risk for RSV. The other sad fact to this is that RSV doesn't just run from October till April. Last year it started in September as peak season and some insurances still wouldn't pay for the shot till November. You have to fight!!! As moms of preemies we are good at that! One thing to also remember is that they should be old enough for the flu shot in divided doses which should give them extra protection. I was so thankful to have gotten the shots last year. Yes we did end up in the hospital for 6 days with a very mild case. I don't even want to think of how bad it could of been had we NOT gotten the shot! Good luck in your battle we are all fighting with you.
S
Noah started getting Synagis in the NICU for October, November, and December 2005. We got them at the Peds office January 2006 - May 2006 and October 2006 - April 2007. I don't think we're getting them this year. Noah turned 2 in May, and the first item on our insurance approval form last year was to check off "Under age 2". I'm kind of nervous this winter since we're going to be out in pulblic. I guess we'll just go crazy about handwashing and hope for the best.
Halle was born in January, discharged in April on 02. She qualified her first two years at home. I was surprised that insurance approved the 2nd year, but they did b/c she had been on flovent in the past six months. Surely if Serena is even on a little bit of 02 she should qualify. If insurance refuses, I would definitely fight it!
This will be Dakota's third year to get Synagis. She'll turn 2yrs old in February but since she's still on oxygen and having a lot of medical complications she's approved again. Typically here in our city you just get two years of Synagis which is what happened with my son.
Ashton has had it now for two years and hopefully again this year but I am not sure yet.
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