my two week old daughter was officially diagnosed with CF today. we go to the pulmonologist tomorrow to see what we're facing. the receptionist on the phone said to have a list of questions ready for the doctors tomorrow but i'm still reeling with this news that i can think of any. this is my first child i'm a nervous emotional wreck right now so any help anyone can give me is most appericiated!!
OK the first thing you need to do is take a nice long deep breath. It might feel like it is the end of the world, but what you are feeling is normal. I am not going to lie to you it is a lot of work to keep your baby healthy, but you can do it and with time it will just become routine! With my son's CF the first 2 yrs was the hardest. I think what was happening, is we had to adjust all his meds until they were just right. He is 11 now and is doing great. And you have an advantage because you found out early. Preventive care is the key in fighting CF. Even in only the 11 yrs since his diagnosis, the care has come a long way. Just make sure you get your care at a certified CF center and you will be all set. There will be a few bumps in the road and you will feel like you can't take it anymore, but you just need to breathe. There is a lot of support out there, and you might hear horror stories, but just remember every CF patient is different and there have been more advances in medical care, so don't listen to people who say "oh 50 yrs ago I rememeber someone blah blah blah...." Medicine has come a long way! My son is a "normal" child, with "normal" friends, he just has to do breathing treatments and take some meds. He plays baseball, rides his bike, plays football, rides his skateboard etc. Anyway I am sorry for rambling, but I just wanted to give you positive thoughts! Hope all goes well tomorrow, Noella
I know how you feel. Reading your post brought me back to two years ago. My daughter is two now, we found out she had CF when she was three weeks old. I was a total mess. I cried every time I had to tell anyone about it and for at least a week after they told us. She is our first child too, so being a new mother and then finding out we had a pretty serious medical condition on top of that...I didn't know if I could handle it all. I would ask about BCMH (Bureau for Children with Medical Handicapps). They are like a back up health insurance company and as long as it is CF related, they will cover whatever your insurance company won't. My case worker here told me that CF is the only disease that they will cover for your child's entire life. Everything else they only cover until they turn 21. They have been a huge help as our insurance is really crappy. My daughter is 2 years old, she weighs 36 pounds, and for having CF she is staying very healthy. We have a few coughs here and there, but we have never had to stay at the hospital or any really serious problems. The docs tell us that her weight gain is really great too. She has to take four enzyme pills before every meal, we do two breathing treatments and two percussion treatments a day, and she takes albuterol for both breathing treatments and pulmozyme in one of them. Other than that she lives a normal life. She is so active and so happy all of the time. Like what was said before, every CF child is different. Some cases are more severe than others. But finding out so early is such a wonderful thing. It has become a part of everyday life. Hailey sometimes gets really upset about doing the treatments, but she takes it like a champ and does them every time. I don't mean to ramble, but I some times can't help it when I talk about her. I never thought I would have a two year old hero. LOL Hopefully telling a little of my story will maybe help you figure out some questions for you to ask your doctor. If it doesn't (because I know everything is a jumbled mess in your mind...it's hard to breathe and think) maybe I could at least give a little comfort to your situation. If you have any questions or concerns feel free to ask me or this wonderful group of people. I hope eveything turns out okay for you and you have my prayers.
Hello,
I'm sure your still reeling from the news and I totally understand your fears. Everyone of us here really does know how your feeling. Just remember that what your CF team asks you to do is all stuff you can manage! Take notes on what they tell you to go home and do. I remember feeling so overwhelmed sometimes that I would walk out the door and not be able to remember half of what was said in the visit and would have to call them back and clarify things.
Medicines and treatments have come a long way and there are some really hopefully ones being tested right now. So don't let yourself get too upset and enjoy your preciousbaby for the gift she is. Most people would never guess my son is ill. He looks and acts normal to anyone who doesn't see all the work done at home to keep him that way. Organising meds and doctors, sterilizing equipment.....It's going to be some extra work on your part but you can do this, stay strong for her. Being vigilant is your best tool, you want to catch colds and stuff early on and treat them before they become serious. You can do this I promise.............
Feel free to ask anything you want to know. God Bless
God Bless
okay so i had my first (of what i know will be many) doctors visits yesterday. and i feel like my brain is gonna start leaking out of my ears. but i got lots of notes and a nebulizer and vitamins supiments and an enzyme suplement to help her gain weight. now that i know a bit more about this condition i'm not as big of a nervous nelly as i was on tuesday.
i'm just beginning to look through all the info and resources i got from my CF team and from what i've seen so far i can't help but have a bright outlook on my daughters life!!
Welcome to this elite group of moms! Our children are all very special in their own way, as all children are! I know this can be scary, intimidating, and just plain sad, but please know that we are all in this together and we're here to support each other! My son was diagnosed when I was 6 months pregnant, so I went through everything you're going through before he was born, so we were a little prepared, but how much can you be honestly? My son stayed in the NICU for 2 weeks prior to coming home as he was born at 37 weeks and weighed 5 lbs. He was so tiny! But, he's now 17 months old and he's doing fairly well with all the meds, enzymes, etc. Keep your head up and stay strong! They are sweet precious children that God has made just the way He wants them to be!
Hello...I am in the same place pretty much as you. My little guy is 3 months old and we are waiting for the official lab results to indicate if he has CF. Can I ask you a question? Was your child's newborn screen normal? My son's was normal and yet they say they are so sure he has CF. Just wondering if this happened to anyone else
Just wanted to say that while we all have our moments of fear or confusion or just plain anger, all I've seen in this group are strong (beyond comprehension) women trying to be the best moms they can be. And I'm so glad I found this group! Thank God! Talking about our fears, our routines and our daily lives is what's going to get us through those rough times so that we're perfectly lucid to take in all the joy we've been given!! : )
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What do I need to know to be a good advocate for my son?
- lillielpr
on Mar. 9, 2010 at 7:45 PM