December 29, 2016 was a nice, sunny winter day. My parents were in town for the day and I went to work, thinking I would leave a little early to spend some time with them. Around 8:45, after discovering some blood, I drove myself to hospital, where I was admitted to L&D. After many hours of waiting and a few long ultrasounds, they took me back for an emergency C-Section. I was 25 weeks along.
Mae arrived at 4:52 pm. She weighed 1 pound, 12 ounces and was 12 1/2 inches long. She was tiny and perfect, even with a hundred wires attached to her and a tube & vent helping her breathe. 
When she was three days old, a nurse discovered a skin irritation on her right side, thinking it was caused by one of the sensors attached to her. It continued to get worse, it was biopsied and experts around the country were consulted.
The morning of January 11 our doctors at the hospital said Mae would be transferred to Children’s, about an hour away. My husband left work and my mom went back to our house to pack me a bag (putting fresh meat in freezer in the process, I never would have remembered to do that). By 3 pm, we were in the smallest NICU room watching as numerous teams came to look at Mae and her wound. I’m almost certain more then 50 people came in her room that day. Surgery was scheduled for 9 pm that evening. My childhood minister & family friend baptized Mae by phone late that evening, with Justin, sprinkling water on her isolette from a sterile water bullet. The admitting doctor gave Mae a less then 20% chance of surviving. Her surgery was the scariest hours of my life. That surgery included removing two infected ribs and left her chest wall open. Two days later, the surgeons went back in to do another debridement and remove another partial rib. Zygomycosis was the name of her fungal infection and is usually found in cancer patients due to their compromised immune systems. There was no research on how to treat someone as young & tiny as Mae. A course of two anti fungal meds were given for the next five months. She got daily visits from both the surgical & infectious disease teams. She will most likely require additional surgeries as she grows to reconstruct her chest wall.
The next few weeks were long, as all we could do was wait for Mae to grow & heal. March 19, she was extubated for the first time and we got to hear her tiny voice. Due to her long intubation & poor lung development, Mae developed BPD & pulmonary hypertension. After four weeks of no movement on vent settings, one more intubation and an extubation, the decision was made for Mae to get a Trach and g-tube on April 21. Justin & I jumped right in, learning the trach life. The home vent was tried, with no success. One of the doctors described it as going from a BMW to a Ford. Finally, the first week of June, Mae got on the home vent and liked it. We also go to try bottle feeding & breastfeeding for the first time. A care conference was held to discuss the next steps.
The next step was a move back to our hometown to a Rehabilitation Hospital on June 27. Mae was 180 days old. Leaving the NICU was bittersweet, we wanted to leave, but we were leaving an amazing, loving, caring team of nurses, doctors & therapists.
I decided to go home & sleep in my own bed the night of June 29. At 2:17 am, the hospital called us, Mae’s trach had somehow come out and it took 10 minutes of CPR to get her back. We met Mae at the closest ER, where she was awake, just a little miffed at getting an IV in her head. After consulting her doctors at Children’s, Mae went back to her rehab hospital.
Over the next few months, Mae worked so hard during all 3 plus hours of therapy a day. Justin & I were anxious to take our little girl home, but we needed night nursing. Somehow, the stars aligned & prayers were answered in late September; home nursing had been found! Equipment & supplies started arriving.
Finally, on November 1, at 307 days old, Mae got to come home!
Dirt Rd Dreamer 