It was that day, that the lives of the Arnold family had forever changed. Madelyn Emma Arnold was born at 9:21pm weighing 1lb 10oz and 12.5 inches long. Because of being born very premature and being diagnosed with bronchopulmonary dysplasia, Madelyn spent roughly 10 months the NICU at Rush University in downtown Chicago.
The cost of a typical day in the NICU is roughly $11,000 per day (according to google), Madelyn was expected to be in the NICU until her due date of April 28th, but it ended up being much longer, it was actually 10 months! The grand total of her hospital bill upon discharge was $2.5 million dollars!!!
On November 6th 2014, Maddie was FINALLY discharged home. She is now trached and on a ventilator and oxygen 24/7. Her diagnosis of Bronchopulmonary Dysplasia and Broncheomalacia is our battle. She makes huge strides every day and there's been talk of her POSSIBLY being weaned off her ventilator later this spring/summer.
The good news? We do have insurance! The not so great news? Because Madelyn is a MFTD (medically fragile technology dependent) child, I cannot return to work and stay home to be her caregiver. Her dad and I try our best not to worry about the bills and remain positive for Madelyn's sake, but it's tough day after day.
Right now, Madelyn has 24/7 nursing. However, we pay out of pocket for her diuretics each month, insurance companies view these meds as "maintenance" drugs but when you have a severe lung disease, these meds keep the fluid off your lungs! She also averages 10 or so doctor visits a month which is quite a task. On the days of her visits, Dad has to take off work to assist. When Dad misses work, it is unpaid.
The bottom line? We never, in a million years, dreamed we could have a baby who was born at 26 weeks old. We never could have prepared for this. It's such a scary time and truly an emotional roller coaster.
I went back and forth on reaching out to family and friends asking for donations, but the reality is, this isn't something we can do on our own anymore. We are only as strong as our support system.
- Danielle Kiff-Barker
- Tiger Scott
- Lisa Jensen
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