But from everlasting to everlasting the LORD's love is with those who fear him and his righteousness with their children's children . . . Psalm 103:17

Wednesday, October 10, 2012

Brochopulmonary dysplasia (BPD)

Quick note from me, "Oops Lady," with hopefully minimal mistakes. :)

Today I found out that 4 of our 5 kiddos actually have BPD. I thought only Seth did. But Will, Marcie and Grace also have some scarring in their lungs and still need oxygen. Will and Marcie usually only need a tiny bit; Grace tends to need more, not surprising given how tiny she was/is and that she was the last baby out of the womb and needed ventilator support in her early weeks.

Which brings me to the flu shot. . . why are we requiring volunteers to get it? (After all, beggars can't be choosers, right?) :) I guess you already know the short answer: Because the influenza virus, which affects the respiratory system, could very easily kill our babies. We just can't risk it especially as people are contagious 1-4 days BEFORE having any symptoms. Even scarier: some people are carriers and never have symptoms yet can give it to others, so your strong immune system may not be protective for our kids. It is contagious from up to 6 feet away, spread by coughing, sneezing and even talking, plus of course direct contact and sometimes surfaces.


Which brings me to the main point of this post: In the very near future we will need many volunteers to help with baby/family care. (Please, please, please!) If you have previously expressed interest in helping, you should have received an email from Stacey Walter outlining a basic description of the volunteer shifts as well as outlined the health requirements to work with the babies.  If you  have not received that email, please send Stacey an email at jonesquints@yahoo.com.  Once you have responded to her regarding the health requirements, you will be able to see the available shifts to sign up for baby/family care.  

And once again, we cannot thank you enough for all you are doing! And most of all, thanks for praying. :)

Gratefully in Christ,
Carrie

13 comments:

  1. Gavin and Carrie,

    I don't live close enough to help volunteer, so I haven't seen the health requirements, but you should also include the whooping cough vaccination. Where we live there has been an outbreak of the whooping cough. Thankfully my older three had already been vaccinated for it when we brought our 28 weeker home. Just something to think about. You continue to be in my thoughts and prayers!

    Sarah

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    1. Hey Sarah,

      Yeah, that's required too. It's not so much that as the flu shot that has been the issue for some volunteers. I think some of it has to do with the fact that a flu shot is "over the counter," no prescription necessary for adults, whereas the TDaP (which, as you know, includes whooping cough/pertussis) is only given by health departments and doctors. We're also requiring the varicella if people haven't had chicken pox already. Just following the NICU's requirements! :)

      Pumpkin hats are coming up! :) Can't wait.

      Love and thanks,
      Carrie

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    2. Oh, I can't wait to see your little 'pumpkins'. :) I can't believe David is so close to coming home. Before you know it they'll all be home with you.

      with love and prayers,
      Sarah

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  2. I agree with sarah. When we brought the twins home I wanted people to have had the whooping cough (pertusis) vaccine as well.

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    1. Thanks for caring! Please refer to my response to Sarah; just wrote it. :)

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  3. What does NICU say about the fact that the flu vaccine is a guessing game as to which strains will emerge this year? I'm all for protecting the kiddos, but I don't know if it's "false security" or not. http://www.cidrap.umn.edu/cidrap/content/influenza/general/news/feb2812fda.html Now maybe they do now know that these strains cover the current season. I don't know. But you might want to ask about it--in the midst of thousands of other things!

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    1. Thanks for pointing that out; great website. I was just reading something about this. That's why it's SO important to wash hands so well and stay away at the first sign of symptoms (although I'll miss my valued volunteers!!!). The flu shot is just the best we can do, the scientific developers not being omniscient, obviously. A common cold can kill preemies with bad lungs, so I don't think we have a false sense of security due to the flu shot. :}

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    2. OK--good! We do the best we can and leave it in God's hands. I almost felt bad bringing this up--don't want to add burdens. But there are times I think someone would/should know something and they don't, and then I feel bad for not telling them about it. Praying for you and darling Seth, especially when I'm holding my little one and knowing your arms must ache to hold him.

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  4. That reminds me, it is on my to-do list today & I should go do it now! Still praying for all of you & eager to help with that first homecoming celebration! Karen Hall

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    1. It's going to be delayed, alas. :( Poor David is too tired to finish 8 bottles without bradying. He's still so little! Just over 5 pounds and the tallest baby, so the skinniest!

      Thank you SO much; can't wait!!

      Love,
      Carrie

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  5. I'm not usually a flu shot person, but for you guys made an appointment today :)

    There's some confusion about my TDP, so I'm trying to figure out whether I got the full version that included pertussis. If not I'll get that too.

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    1. Awesome! Thanks so much, Emma! Isaac LOVES your shirt, by the way. :)

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  6. Hello. I've just recently come accross your family's amazing story. My son was born at 26 weeks gestation and though he was off oxygen 6-7 weeks after he was born, he left the NICU with BPD 4 weeks after - and on 24 hour oxygen. As you probably know, this is a very common condition for preemies, and though it can be burdensome (breathing treatments, 24 hour oxygen, etc..), it is manageable. It has now been more than one year and he still uses oxygen when he sleeps at night. I know all we want as parents is to know our babies are healthy, and I admit, this diagnosis was difficult for me to accept because I too was led to think that he was breathing well after weaning him off the oxygen the first time around. Needless to say, I had to make some major adjustment to my expectations.
    Lung development to resolve BPD can seem painfully slow, but considering the circumstances under which our babies were born, it is a small obstacle to overcome compared to so many other complications.
    I pray you and your little ones can stay flu-cold-cough free for at least the next 18 months and they all overcome BPD soon.

    Best wishes to you all...

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Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

Gavin, Carrie, Isaac, Will, David, Marcie, Seth, & Grace Jones

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