newborn daughter just diagnosed

StayStrong

New member
Thank you all for your support and for sharing your stories! I wanted to give an update... Riley was discharged from the NICU at the beginning of December and we are thrilled to have her home to start our lives together. In her first week home she was seen by her pediatrician and we visited the CF clinic to meet our care team. They were great so i hope we all work well together. The CF clinic also travels here once a month for their outreach clinic so we met with them again a week later. She is gaining weight and we are giving enzymes, vitamins, salt, and acid reflux meds and just started her CPT. We will begin her breathing treatments tomorrow since the machine just came in today. She continues to have regular poop so we are happy and there is currently no breathing trouble so we are doing as much prevention as possible. Right now we are just adjusting to having a new baby with just a few CF adjustments. We are taking it one day at a time and staying positive. Thanks again and I will be around the board a lot!
 

StayStrong

New member
Thank you all for your support and for sharing your stories! I wanted to give an update... Riley was discharged from the NICU at the beginning of December and we are thrilled to have her home to start our lives together. In her first week home she was seen by her pediatrician and we visited the CF clinic to meet our care team. They were great so i hope we all work well together. The CF clinic also travels here once a month for their outreach clinic so we met with them again a week later. She is gaining weight and we are giving enzymes, vitamins, salt, and acid reflux meds and just started her CPT. We will begin her breathing treatments tomorrow since the machine just came in today. She continues to have regular poop so we are happy and there is currently no breathing trouble so we are doing as much prevention as possible. Right now we are just adjusting to having a new baby with just a few CF adjustments. We are taking it one day at a time and staying positive. Thanks again and I will be around the board a lot!
 

imported_Momto2

New member
staystrong- lotta people here are leading very full and happy lives. CF is part of who we are, or who our loved ones are, but a diagnosis doesnt determine our future. Treatment has come a long way.....I'm married, two kids, two graduate degrees, did a stint as a professional athlete, and still kicking along happily. Like anyone else, life has been, for the most part, very good if not easy. But you have the right idea- s t a y s t r o n g. Love your username!
 

imported_Momto2

New member
staystrong- lotta people here are leading very full and happy lives. CF is part of who we are, or who our loved ones are, but a diagnosis doesnt determine our future. Treatment has come a long way.....I'm married, two kids, two graduate degrees, did a stint as a professional athlete, and still kicking along happily. Like anyone else, life has been, for the most part, very good if not easy. But you have the right idea- s t a y s t r o n g. Love your username!
 
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