While I assumed the NICU team knew better than I did on how to take care of my daughter medically, my motherly instinct was on point from pregnancy to birth to NICU to home. I was just trying to get my footing and to trust my instincts as well as to get to know my newborn. As it turned out, I needed it because I was the one looking at the breast pump in my postpartum room the next morning and telling my husband I needed to try and help pump for my daughter. No one came and talked to me, I just pumped (haphazardly) and had my husband bring the small amounts of yellow liquid to the nurse to see if it would be useful. As the nurse rushed the colostrum down to the NICU she had me visit the Lactation Consultant’s office to get a nursing bra and sign up for a rental pump for home. I felt empowered now but that was quickly dashed each time I visited my daughter in the NICU. Wearing a barcoded bracelet, being asked to scrub up to my elbows, put on a patient gown, having a front desk person call back to see if we were allowed in, and then given entrance through the large, secure automatic doors. This was all to see my own daughter. Trauma hit me every single time we visited her save for the first time I did Kangaroo Care with her. And that only happened because I asked for it every single time we visited without having a clue what it actually meant (my mother-in-law, a former registered nurse, is the one who mentioned it early on, wondering when they would let me do Kangaroo Care). I had a nurse bully me about breastfeeding instead of pumping when I knew my daughter was having trouble at the breast in the first place. And all we kept hearing was “She’s doing great!,” which we thought meant that everything was going to be just fine. Right.
Becky struggled through three heart defects, anemia, apnea of prematurity, bradycardia, severe reflux, sepsis, major feeding issues, and respiratory distress syndrome. She came home on an apnea monitor and oxygen with feedings as well as medications and a team of specialists for follow-up. Oddly enough, despite my concerns about her development, the neonatal developmental team did not deem her qualified for early intervention (EI) services, but noted the local Health Department’s monitoring program instead as well as the NICU follow-up program every 6 months. Becky landed back in the peds unit 5 days after coming home due to alarms on the monitor, throwing up feeds, and sleeping through feeds, all while we worked through zero sleep. I felt horrible putting her back in the hospital, but I knew that is what she needed. She came home on full-time oxygen and new medication as well as additions to her feedings. She went from strength to strength after that and a bottle change. Life at home was stressful the first couple of years due to the follow-ups, keeping our daughter away from people, and trying to stimulate her developmentally.
