The big day is tomorrow. Our daughter is getting discharged from the NICU. While we did not make it out “tube and wire free” as originally predicted, the NICU staff feels confident that she will flourish under our care at home. While we were ELATED to get the news that she could go home, we are also equally TERRIFIED about bringing her out of her safe little bubble that has been her home for the past three months, filled with experts that know the ins and outs of neonatal care. In order for her to come home, though, we had to get our sponge on and learn as much as we could from the care team about how to perform tube feeds and gavage feeds (aka tube feeds without electricity). We had to learn how to place her NG tube, and we had to learn how to operate the home style version of a heart and respiratory monitor that she has to be on at home during our “night shift” of continuous feeds. We had to learn how to blend her breast milk and formula in a specific ratio to create the number of calories that she needs to keep her growth up. (By the way, she’s on the 10th percentile of growth). We had to learn how to hang her feeds in a kangaroo pouch and feed it through the pump. We also have a HUGE list of specialists that we have to follow up with in addition to her pediatrician. I imagine that parents of full term babies feel pressure when they depart from the hospital with their newborns to “not screw it up.” I feel that pressure about 20 times more with our daughter, given what she is arriving home with. Despite this – we are ECSTATIC about her coming home. We cannot wait for her to feel the sunlight on her face, the wind in her hair, and the movement that comes with riding in a vehicle for the first time.
It will be bittersweet leaving the NICU. Despite all the stress and anxiety that I have felt while being by our daughter’s side there, we have made many dear friends and acquaintances. We will be shifting from a place of social interaction and noise to our quarantined home. Here’s to making this happy and huge transition after 98 days in the NICU.