I am new here. My 3 month old was diagnosed at 2 weeks thanks to the newborn screen. She is rather large for a cf baby. She was 8.9 at birth and was 13.1 at 10 weeks. Those enzymes are really working for her.
How do you deal with the emotions? Do they start to disappear after a while? How long was it before your little ones started breathing treatments. My dd hasn't been sick at all since birth and we are trying to keep her away from everything and every one to keep it that way. Do you feel like you keep them in a bubble or is it just me that feel this way?
We are doing a lot better but I know we are going to have some rough times ahead. I know the CF clinic here is one of the best so we are in good hands.
I look forward to getting some good info and support form you guys. Thanks for letting me ramble.

DS was diagnosed at birth because of a bowel obstruction due to meconium illeus (sticky green poo). He was in NICU for a month and a half. We began breathing and chest physiotherapy (CPT) immediately. Actually he's so used to it, it seems to calm him and a lot of times he falls asleep. I just spoke to a woman whose granddaughter was diagnosed a couple months ago and is the same age as ds (22 months) and she said it was HORRIBLE starting CPT -- her grandchild screamed and fought the entire time. She's used to it now, but it was a real rough start.

I gradually got used to the idea and began enjoying ds after I started to get a handle on his treatment, medications, etc. I was so afraid the first year that he'd end up back in the hospital, that he wouldn't be able to go to day care 'cuz he'd be sick all the time or that he'd catch the flu.

He doesn't live in a bubble. He goes to a day care center. He gets flu shots each year. As do I and DH. He's on prophalactic antibiotics. We keep him away from other CFers. I hate going to cf clinic 'cuz the local one doesn't seem to understand about cross contamination and germ prevention. When we go to the store, I wipe down the cart with antibacterial wipes and when we get home or to the car after being in the mall, restaurant or playground I wipe off ds's hands immediately, before he can pop them in his mouth.

Sometimes I do feel isolated even though I work full time, as does DH and that's because we have a set routine when we're home with him. He gets CPT 3 times a day -- a.m., dinner time and bedtime. Our doctor has stressed how important it is to keep DS's lungs healthy. So DH has never gone on an overnight trip to his grandparents and when he has to have TOBI nebs, which takes 30 minutes twice a day, I really feel overwhelmed like I don't have time for myself. I get home from work, we do CPT, feed DS, I mix up his medications for the next day, we eat supper, bathe him, rock him to sleep, then at 10 we do one last treatment.

Hi
My duaghter was diagnosed at 2 1/2 weeks of age because of newborn screening. She was started on enzymes right away but is currently having some trouble gaining weight.

We started chest pt when she was about a month old but still only do it once a day for five minutes because she hasn't shown any lung symptoms yet. She has had two colds in the last month, but I don't know if they will consider this "lung symptoms" or just a cold because everyone around her has had the same things. She goes to clinic on Wednesday so we'll see.

I understand about the emotions because I have definately gone through some roller coaster emotions myself. In the beginning, before she started having any symptoms, I was very optimistic and upbeat about all of the new research and stuff, but it gets harder to stay optimistic when she fails to gain any weight in a month.

To answer your question, it does get easier with time. You start to see that there is hope and you can keep your child healthy with the routine treatments and some of the shock wears off. My daughter is now 7 1/2 months old and I do not have nearly as many bad days where I can't stop crying. One of the most important things the clinic staff told me, I think, was to enjoy her babyhood because so many parents spend so much time worrying that they don't actually just enjoy the fact that they are babies. I have tried to do this every day so I don't have to look back someday and resent the time I wasted.


Congratulations on your little miracle and this seems to be a good place to get support. I know I am here for you if you need anything.