back in april, when baby m was first born, i thought my biggest hurdles were going to be, in no particular order:
•getting out of the house on time…oh wait, that’s always been my problem.
•managing things by myself while my husband works 60+hrs/wk
•keeping my weight down (total self centered one there)
•maintaining cleanliness and order in the house (haha!)
•and dealing with my 3 year old son and his emotions while he handles the changes that a new baby in the house will bring.
i was not expecting that phone call from the pediatrician at 6 pm on a wednesday evening. it was a week after baby girl was born and also my husband’s first day back to work after his paternity leave.
the dr. proceeds to talk, “…there was an abnormality on baby m’s newborn screen for Cystic Fibrosis. there is a 95% chance that this is nothing to be too concerned about…the next step is a sweat test.”
huh? cystic fibrosis? like that abc movie from the 80’s: “Alex: The Life of a Child.” there was even a book. for some reason, as a young kid, i was intrigued with this movie. it was a true story of a little girl who was very sick. throughout the movie, craig t nelson and bonnie bedelia thumped on her chest while they sang “wheels on the bus.”
alex passes away as a young child and i remember how sad i felt.
all the while the dr is speaking, i am remembering this movie.
somehow, i manage to mumble “okay” and “yes” to the pediatrician while fighting back my tears.
after we hang up i start to wonder, “what is a sweat test? so do they make me wrap a lot of blankets around her and then test her sweat?” …not quit, bex.
first, what IS cystic fibrosis, anyway?”
taken directly from cff.org:
Cystic fibrosis is a life-threatening, genetic disease that causes persistent lung infections and progressively limits the ability to breathe. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.
Symptoms of CF
People with CF can have a variety of symptoms, including:
Very salty-tasting skin
Persistent coughing, at times with phlegm
Frequent lung infections including pneumonia or bronchitis
Wheezing or shortness of breath
Poor growth or weight gain in spite of a good appetite
Frequent greasy, bulky stools or difficulty with bowel movements
fast forward to tuesday.
baby m is exactly 14 days old which is the youngest this test can be performed since newborns don’t sweat yet like the rest of us.
8 am and my mother in law and i arrive at the hospital, which is a cf testing site.
onto her arm, the nurse applies a solution: a highly diluted liquid of sulfuric acid.
oh, yes. you read that correctly.
then an electromagnetic probe is wrapped around baby girl’s arm. a timer is set for five minutes while it basically irritates her skin. the probe is removed and then the nurse applies a piece of sterile gauze and wraps her arm very tightly.
repeat for the left arm.
from here we are ushered into a warm room for 30 minutes where they turn the heat up to ensure baby girl will indeed, sweat.
all i can say is that it was pretty stinkin’ hard to helplessly watch my newborn baby girl go through this process.
seriously, weren’t my biggest worries supposed to be peanut butter smeared everywhere and dust bunnies???