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Thread: Newborn just diagnosed and I M FREAKIN OUT

  1. #21
    Super Moderator
    Join Date
    Apr 2006
    Posts
    20,957
    Oh and DS has been hospitalized twice. First time when he was born, second time when he was about 6 years old due to a bowel obstruction. I was TOTALLY freaked out by parents of CFers who called me to offer support when DS was a newborn because they told me horror stories about how the first couple years they were in an out of the hospital due to illness. DS was actually the healthiest kid in his daycare. He had a couple ear infections and colds his first year and a stomach bug, but that was it. He didn't miss any kindergarten or 1st grade due to illness and last year he did miss a couple days but it was a normal run of the mill stomach bug. DH and I were flabbergasted because we weren't quite sure what to do since we hadn't been used to ds being ill.
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  2. #22
    I guess I m fortunate the children's hospital is 20 minutes away and they have a top rated cf clinic! 4 times a day?? Do u have any other children cuz that is my main concern. How will I ever have time for them now

  3. #23
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,034
    Dear Mom,
    I'm so sorry. I lived through what you are going through a little over 3 years ago. It is horrible, but it does get better. It is a process and everyone does it differently. I'm pasting 2 threads you might find helpful:
    http://forum.cysticfibrosis.com/thre...uld-have-known


    http://forum.cysticfibrosis.com/thre...born-Screening

    Also, re your question of will you ever have time for them--YES. You will make it work. Your schedule at first will be so hard b/c you have a newborn besides having the CF stuff. But you'll get into a routine and then in a few months the routine will change. A few thoughts for now: Maybe make the treatment times "video" times or "book time" for the other kids--they can sit and watch videos with you while you do the treatments with the baby. Maybe do one early am or late pm before the others are up, if you are up with the baby anyway. 4x a day is when they are sick. Our son is just a bit over 3 and has had lots of GI issues but has never been sick other than that. Each child is different but if you are religious about the treatments, there is more of a chance that the illnesses will be few and far between.
    hugs and prayers .

  4. #24
    Junior Member
    Join Date
    Feb 2012
    Posts
    8
    My daughter was diagnosed at 2 days old. I was devastated, and did so many crazy things... For instance, I had her bassinet right next to my bed and the baby monitor right next to my ear. I held her all day and watched and counted every breath she took. If she coughed or sneezed I called the doctor. The craziness went on and on, until one day wonderful Dr. at Childrens Hospital Los Angeles pulled me aside after one of her appointments and asked me point blank " Have you put a death warrant on your daughter?" I was speechless, I didnt answer , I just cried. He told me to get a grip , stop obsessing over her CF and to start living as if there was nothing wrong with her. Of course in my head I thought..Oh yeah easy for you to say. I wish I had joined a support group, somewhere I could go to where people like me had children with CF. I was stubborn and I was going to battle this on my own. I wish I never had, I needed support and information, and encouragement from other families that were going through the same thing. Today my daughter is 17 years old, in her Senior year in high school, plays basketball on the varsity team at Bishop Alemany High school, runs track, has a boyfriend, and goes to all her high school events. We do have had our moments when my daughter has been hospitalized, but we all got through it. And she does get sick with her colds and coughs and I still worry terribly, and I still go in her room at night to see if she is breathing comfortably, but I dont Freak Out anymore... Join a group, keep informed, let go and enjoy your baby... They grow up fast and you dont want to miss a thing. Dayna was featured in an article in the Los Angeles Daily News, if you want to read about her it is under "My Hero" Good Luck to you and your precious baby.

  5. #25

    Baby girl update

    Quote Originally Posted by Dowling View Post
    My 11 day old daughter was diagnosed with CF 2 days ago from her newborn screen. I AM FREAKING OUT!
    Any advice on what our day to day life will consist of
    My daughter has put on 9oz in 4 days since starting on creon! Super excited. Dr said she is thriving

  6. #26

    newly diagnosed baby

    Alright, I rarely post, but I don't think anybody mentioned breastfeeding. Are you breastfeeding or breast-milk feeding Dowling? Its a great way to provide immune protection and avoid constipation for the baby and nobody else can do it. Just thought I'd add my .02. Both of my boys have cf, one was diagnosed at 4 years old and the other at 2, and I honestly think that the reason it took them so long to figure out that my oldest one had it was the breastfeeding. Once he was no longer feeding at the breast THEN he began to fail (your baby won't, don't worry! you already know what he has) and THAT's when they began searching for answers. When they found it, we instantly knew his brother had it too (same symptoms).

    Just to let you know, they are both fine, had "relatively" normal childhoods, have great memories of growing up, family trips, etc., and are both through college now. And YOU have the advantage of lots of amazing treatments we didn't have. Treatments will only get better and better. Good luck! Isabella

  7. #27
    Omg thank u so much Isabella ! Yes we are breast only.

  8. #28
    Senior Member
    Join Date
    Jun 2011
    Posts
    506
    Very good to hear! Keep up the good work. You can do this!
    Pat, 50 year old male with CF, DF508 & CFTR2. DX at birth. Double-lung trans on 6/16/05 asthma, diabetes, arthritis, chronic pain.
    Medically retired truck driver, married to my personal Angel for 23 years.

  9. #29
    Might be a dumb question but would mucinex or an expectorant work on the mucus

  10. #30
    Super Moderator
    Join Date
    Mar 2012
    Posts
    2,034
    No. The mucus is completely different. There is a med called Pulmozyme (sp?) which "cuts up" the DNA that makes the mucus so thick, though. I strongly recommend asking to have your daughter started on that at 2 - 3 months. Will depend on how proactive your CF Clinic/doctor are though, if they will do.

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