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Thread: new moms with cf newborns

  1. #11
    Junior Member
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    Mar 2014
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    Hey!! I am a member of baby center and there is a cystic fibrosis blog where you have moms from all over the world. We talk and vent and share stores. I have attached the link for you. http://community.babycenter.com/grou...ystic_fibrosis

  2. #12

    We're not alone

    Oh my!... Our son Oliver is now 14 weeks old. He was diagnosed with double deltaf508 at 8 days old...
    And I'm still overwhelmed with the whole cf thing.
    I can handle all the medicaments (extra vitamins ABCDK plus iron and the enzymes in Apple juice before and during milk drinking) air treatment (cpt, 3times a day) and kinesist (minimum 3 times a week, every day when having a cold). But it's a lot to think about.
    For the moment he recoverd well from his bowel surgerys (he had meconium ileum, or sticky slymy bowels). Reason they found out only 36h after birth because he didn't poo. So he was in surgery at 40h old and again after 6 weeks to close up the external stoma. As we speak he's in his 3rd week of a first 4 weeks antibiotics treatment as the first bacteria staphylococcus aureus had/has entered his lungs. Today we see him cough more, painful and difficult again as developing a new cold.
    Only in gaining weight he seems to do fine.

    And to be honest, CF diagnosis it's hard to handle the emotional and financial consequences. Also I have no clue how to fit him with this extra in our life, how to organise the daily practical way.
    Untill the end of the month I'm in maternity leave, but I'm afraid to start thinking 'what after?'. Can I work full time again, what with our loan and bills payments if I work less? How to manage with his sis in kindergarten school? And so on and on...

  3. #13
    hll124
    Guest
    My daughter turned 18 just after Christmas. We found out she had CF when she was 4 weeks old. Her first hospital admit was when she turned 6...she had Christmas and her birthday in hospital. At first it's a bit overwhelming, but it gets "easier". Routines will fall into place quickly. Always remember to enjoy your son. Don't treat him as "the sick child". No one wants to grow up like that, with that label over their head. He will achieve great things if you let him be a normal child. We've travelled with our daughter (we're in Australia) and she's been to New Zealand, on cruises, to America and to Nepal - where she was the only person on the school trip who didn't get sick! There will be tears, trials and tribulations, but over the years I've learnt that while we're dealing with CF other friends have had other stuff to deal with with their young babies. Sure, their stuff mostly goes away after a while, unlike CF, but as I often say....it's all relevant! Embrace your baby boy, teach him how to follow routines, show him the world that is waiting for him, and who knows where it might lead him. Wishing you all the best.....and trust me, it does get easier 😊

  4. #14
    Hello Erica,
    My daughter is 1 month old and she went through the newborn diagnosis. She has two mutations there we have started enzymes right away and they are doing their job perfectly! I am happy to see my little angel recovering very fast.

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