Preemies

Letter to family members regarding RSV

So, since Reagan was denied for the Synagis vaccine. (UGH!) The pediatrician recommended that I send out a list of guidelines for friends and family members that will be in contact with her. I want you guys to let me know what you think. Do I need to add anything/take anything out? Thanks guys! (I will add that I used the sample letter on preemies.org as a guideline)

 

 

 

 

Dear Family and Friends,

 

 

           

We want to start by saying thank you for the outpouring of support we have received from everyone throughout the past seven months. So many people have done so much for us and every bit of help we have received truly is appreciated. We are experiencing the biggest challenge (and most exciting time) of our lives, and we?re lucky to be surrounded by so many family members and friends who have shown us so much love and support.

 

We were asked by Reagan?s pediatrician to educate all of our family and friends about ways we can keep her healthy during the winter months. One really important virus to be aware of is RSV (Respiratory Syncytial Virus). For full-term babies, this virus usually just presents as a cold. Actually, most children will have it by the age of 2. For micro-preemies, like Reagan, it can be life threatening. It can lead to severe upper respiratory issues. This means, if she were to get the virus, she would be admitted to the Pediatric ICU and most likely placed on a ventilator until her body could fight the virus. We don?t even want to think about her being back in the hospital, so we are trying to take all the necessary precautions. According to her pediatrician, since she was such a low birth weight, was born almost 3 months early and had both of her lungs collapse at birth, she is considered ?severely high risk?. Her lungs and her immune system just simply aren?t as strong as a typical 7 month old?s. I know some people may think that exposing babies to germs early on can strengthen their  immune system but with her, that?s not the case. Some infections are simply too strong for her little body to fight.

 

There is a vaccine that preemies can receive called Synagis that is given over the course of RSV season (October through March) that can protect them from the virus. According to the insurance company, Reagan does not qualify because she was 6 days too old at the start of RSV season, she?s not in day care, and doesn?t have any older siblings. For these reasons, unfortunately she won?t be getting the vaccine. The vaccine costs $5000 per injection, so it?s not something we can elect to give her without the insurance company involved. So, it is even more important that we take precautions to protect her.

 

Everyone can carry the virus but school aged children are considered to be the most at risk for carrying the virus. You can be a carrier and not know it but most of the time, the virus presents just as a cold would. Runny nose, cough, etc. Our pediatrician gave us a list of precautions to give to anyone that will be around Reagan. This is not to make anyone mad or upset, it?s to protect her. She can?t stand up for herself, so it is our job as her parents to protect her. So, again, this isn?t meant to make anyone angry or hurt any feelings. It applies to everyone.

 

 

 

Here is the list, courtesy of Unifour Pediatrics:

 

  1. When you arrive, please wash your hands and use hand sanitizer before touching her or any of her toys.
  2. Please, if possible, get a flu shot and a Pertussis (whooping cough) vaccine.
  3. Please don?t come over if you are currently sick or have not been symptom free for at least 5 days or if you live with someone who is sick or have been in close contact with someone who is sick.
  4. If you smoke, we ask that you change your clothing and refrain from smoking prior to visiting, as a preemie?s lungs are sensitive to smoke.
  5. If you are parents to a toddler or school aged child, we ask that your child not touch, kiss, or hold her. (This one is the most difficult because we know that her cousins want to love on her but it is important that we keep her healthy. As soon as RSV season is over, they can hold her again.) They can play with her but they need to wash their hands first and no touching her face or hands.
  6. No one (even adults) should kiss her face or hands. (You can kiss the top of her head.)

 

I know these rules seem like a little much, but they are exactly what the pediatrician asked us to send out. Our number one priority is Reagan and keeping her healthy.

 

Throughout RSV season, our pediatrician asked us to limit the amount we take her out and the amount of visitors we have. For that reason, we will not be going to any gatherings outside of home and we will limit the amount of people that come visit. This does not, what-so-ever, mean that we don?t want visitors. Reagan LOVES to be around people and she deserves love and attention just like any other baby. We are just trying to be cautious? maybe overly cautious in some opinions but when it comes to the health of your child, you?ll go to great lengths. We just don?t want her to get sick and be hospitalized. I know we can?t keep her in a bubble and protect her from everything. She just had bronchitis and an ear infection- so obviously; we know she?s going to get sick here and there. We just want to do what we can to prevent it.

 

We love each of you and we are so very thankful for your love, support and prayers throughout this past year. We are truly blessed to have our little peanut. We appreciate all your understanding.

 

 

Love,

 

John, Leslie and Reagan

 

 

Hospitalized at 28 weeks due to severe pre-eclampsia. Reagan Michelle was born on 4/24 at 29 weeks, 1 day gestation 2 pounds, 11 ounces 15 inches long.
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Lilypie Premature Baby tickers
http://theroadtoreaganmichelle.blogspot.com/

Re: Letter to family members regarding RSV

  • Perfect!  Your letter is great!  It tells everyone the importance and severity of RSV while not offended anyone.  I think it answers people's questions before they pop up, like well, why don't you all just give her the vaccine then?...uh it costs $5000.  Great job, mommy!  Here's to a happy and healthy season :)
    Lilypie Premature Baby tickers imageimageimage
  • Thanks. :) You don't think it's too long do you? lol I don't want it to be over kill.
    Hospitalized at 28 weeks due to severe pre-eclampsia. Reagan Michelle was born on 4/24 at 29 weeks, 1 day gestation 2 pounds, 11 ounces 15 inches long.
    imageimageimage

    Lilypie Premature Baby tickers
    http://theroadtoreaganmichelle.blogspot.com/
  • It is perfect. Much better than the letter I wrote to our families!
    image

    IVF #1 worked! Two baby boys born in January 2011 at 33 weeks.

    Rooting for the ladies of TTTC and IF.
  • image lwmooney87:
    Thanks. :) You don't think it's too long do you? lol I don't want it to be over kill.

    It is long but I think it has to be in order to explain everything correctly.  Most of the things you wrote in there are second nature to you, but to others it is new information.  The letter is very good.

  • image lwmooney87:
    Thanks. :) You don't think it's too long do you? lol I don't want it to be over kill.

    No it isn't too long.  You don't repeat yourself, you just give all the necessary information.  Good job!

    Born at 31w3d due to severe IUGR & Placental Insufficiency--2lbs 3ounces
    image

    We'll miss you sweet Debbie Girl (4.21.12) and sweet Cindy Girl (8.9.12)
    Lilypie Premature Baby tickers

  • Thank you so much for that letter!  Its puts into words exactly what we want to say!  Good job!
    Lilypie Premature Baby tickers
  • image lwmooney87:

     

    Throughout RSV season, our pediatrician asked us to limit the amount we take her out and the amount of visitors we have. For that reason, we will not be going to any gatherings outside of home and we will limit the amount of people that come visit. This does not, what-so-ever, mean that we don?t want visitors. Reagan LOVES to be around people and she deserves love and attention just like any other baby. We are just trying to be cautious? maybe overly cautious in some opinions but when it comes to the health of your child, you?ll go to great lengths. We just don?t want her to get sick and be hospitalized. I know we can?t keep her in a bubble and protect her from everything. She just had bronchitis and an ear infection- so obviously; we know she?s going to get sick here and there. We just want to do what we can to prevent it.

     

    We love each of you and we are so very thankful for your love, support and prayers throughout this past year. We are truly blessed to have our little peanut. We appreciate all your understanding.

     

     

    Love,

     

    John, Leslie and Reagan

     

     

    Grammatical correction:

    It may seem overly cautious by some opinions, but when it comes to the health of our child, we'll go to great lengths.

    Preemie Resources: http://preemiemomblog.blogspot.com/

    DD1: BFP July 2010...HG in first tri, MC delivered vaginally at 18 weeks October 2010

    DS: BFP December 2011...SCH at 5 weeks, SBR at 7 weeks, Placental Abruption at 13 weeks, Hospitalized at 25 weeks, pPROM at 28 weeks, PTL via CS at 31 weeks 

    DD2: BFP January 2013...P17 shots, delivered via VBAC at 39 weeks
  • I think it is perfect!  Nicely done, and I would be surprised if anyone is offended by it.  Sorry she didn't qualify - that really stinks.  Sad  (Although even if she did I think the same rules would still apply, really.)
    IVF #3 brought us our little explorer.

    image

    Lilypie Premature Baby tickers


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  • Nice!

     

    Ok, I missed something, but how in the hell did she not qualify?! Indifferent

     I do not think you are being overly cautious at all!  Actually we didn't let Andrew around ANY kids because kids are often most contagious before they have symptoms.

    FWIW, Andrew had some of the same issues at birth (collapsed lung, oscillator) and we had similar restrictions, he never got sick <15 months and he never had any breathing issues to date.  I know how really stressful it is. HUGS!

     

    image
    My Personal Blog Knot Bio Nest Bio
    Andrew Ryan - born at 26w2d, 2 lb 3 oz, Dec 2008 Elliott William - born at 35w4d, 7 lb 1 oz, May 2011
  • I think this is great and written very well. My DD#2 got RSV when she was just 3 months old and she was not a preemie, but she was small at birth (5 lb 6 oz). Once she was diagnosed with RSV, we were sent straight to the hospital. She spent 5 days in the hospital, with IV antiobiotics for her ears, and steroids. She was given breathing treatments every 3 hours and was put on oxygen her 2nd day there cause her O2 levels were not staying high enough. It was a very rough 5 day period for us. Also the lingering cough that comes with the RSV lasted about 4-6 weeks and we had to continue breathing treatments at home.

    I never knew RSV was as contagious as it was and that to adults it could just be a common cold. This is a very well written letter to ensure everyone is aware of the precautions that need to take place during this season.

  • Absolutely perfect. Without it being that in depth, people might not understand fully, but you don't repeat yourself or ramble.

    The only other thing I might suggest and I've actually read makes a big difference in keeping illness out of a home is to take shoes off outside or in a mudroom and then keep them in an isolated closet near the outside doors, so you don't track germs on the floor through the home.

    ~*~ Nikki ~*~ DS born 2/18/08! TTC #2 since 01/2009 11/01 Round #5 Clomid 100 mg, IUI 11/14, at 10dpiui 11/26 Beta:12dpiui 114 11/29 Beta:15dpiui 755 1/9/10 First U/S: TRIPLETS! 6/20/11 And then there were six... http://andbabiesmakesix.wordpress.com/ Lilypie Premature Baby tickers
  • Thanks guys :) I'm still kind of nervous to send it out. I'm going to have DH read it tonight and I will email it tomorrow. Thanks for your support!
    Hospitalized at 28 weeks due to severe pre-eclampsia. Reagan Michelle was born on 4/24 at 29 weeks, 1 day gestation 2 pounds, 11 ounces 15 inches long.
    imageimageimage

    Lilypie Premature Baby tickers
    http://theroadtoreaganmichelle.blogspot.com/
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