Kristie McNealy, MD

Tonight, I was inspired by an old post by Darcy at Life With My 3 Boybarians, where she discussed some of the struggles her son “Trouble” has endured since coming home from the NICU.  While our daughter’s story isn’t any where near as long or dramatic as Trouble’s, it still irks me when people take one look at her and try to wipe it all away with a statement like “she looks fine now”.  Worse yet, are people who hear about a current struggle (usually sensory related) and trivialize it by telling me that “all kids do funny things sometimes.”  I even had a pediatrician tell me that once . . .

During our daughter’s 46 days in the NICU, she was intubated twice, and she endured 7 days on a ventilator, catheters in her umbilical artery and vein, countless IVs, NG ond OG tube placements, heel sticks, blood draws, and chest and abdominal x-rays, an ecocardiogram, a head ultrasound, a contrast enema, and 5 attempts to place a PICC line before they finally had to cut open her arm to access her veins.

Eventually, after 46 days, we got to bring her home, weighing in at a seemingly enormous 5lbs 10ozs.  Between the day we brought her home, and when she finally walked at 18 months (I was 7 mos pregnant by then, so I’m entitled to say FINALLY!!), she saw a gastroenterologist, cardiologist, allergist, ophthalmologist and pulmonologist.  She spent 5 more days in the hospital, and was on and off oxygen for the next year.  She had an allergic reaction to an antibiotic, and due to two bad reactions to products made from cow’s milk in the NICU, we had to totally avoid all dairy products.  She had 3 chest x-rays, a spine x-ray, an echocardiogram and a CT scan of her chest and head, and a bronchoscopy.  She had RSV, influenza A, two bouts of pneumonia, and several rounds of croup. Plus, she developed torticollis, and refused to do anything other than sit, so she spent 5 months in physical therapy for her neck and gross motor skills until she got kicked out for being stubborn.

When she was 6 months old, I had to go out of town for 24 hours to take the final step of my board exams.  At the time, she was on inhaled steroids, oral steroids, a bronchodilator, antibiotics and medication for reflux.  She was also on oxygen, and needed to be placed on a monitor when she slept.  The instructions I left for my own husband were more than a page long for that one day trip.  There was no way an average babysitter could ever take care of her.

Her 18 month well child check was the first time I was ever able to write ‘none’ when the form asked if she was taking any medications.  That was a MAJOR milestone for both of us.  That was also the first time I was able to say “not this month” when the doctor asked if she had needed oxygen recently.

I’m not really sure where I’m going with all of this anymore, but I guess I just needed to sum up her experiences on virtual paper.  She’s had so many struggles, and like Darcy, sometimes I just want people to know how exactly far she’s come.

Thanks to Cara, by the way, for linking to Darcy’s post so I could find it!