At times it seemed our journey would never end
Moments in Bronson’s Neonatal Intensive Care Unit (NICU) with Harley were hard. I had a love hate relationship with the NICU. At times it seemed our journey would never end. While Harley was in the NICU she was on a ventilator for a week or so after her arrival into this world. From the ventilator she then moved on and began using the continuous positive airway pressure (CPAP) respiratory support.
One thing I remember is the alarms would constantly go off. Anytime her numbers would drop below a certain level the alarms would ding. Every time I heard those alarms, I would become overwhelmed with anxiety thinking something was wrong with my baby. It never got any easier each time they would go off. Harley was slow to get off the CPAP and when she did it wouldn’t last for long before she had to go back on. Finally, when she was able to maintain her breathing, she was taken off the CPAP! To finally see my baby’s whole face was amazing.
Harley continued to make progress slowly. Because of the large brain bleeds doctors found on both sides of her head, Harley would have monthly cranial ultrasounds. Physical Therapy (PT) and Occupational Therapy (OT) would also visit her. After two months we were finally moving to the step-down unit. We were beyond ecstatic; we were getting closer to bringing our little girl home. In the step-down unit we continued to run into obstacles that would again, make this journey seem like it would not end. While in the step-down unit, we were able to give our baby girl a bath and began bottle-feeding her for the first time. I remember I was given a choice for Harley to either see the OT or I could give her a bath, but we could not do both. That was the moment I felt defeated that I could not even make a choice for my own daughter, but looking back now, I understand why. My favorite memory of being in the NICU was being able to hold my girl for the first time. I was a new mother and was able to hold her on Mother’s Day 2013, three long days after her birth.
Harley is a very active girl. She loves to stay busy and keeps her family busy. Harley loves to sing with her papa, she has her own karaoke machine and microphone. Harley loves anything she can do on her own. Most recently she has really loved being at the roller skating rink. Harley is very independent and makes that known.
Gracynn, Harley’s younger sister, had a completely different journey in the NICU from her sister’s. Gracynn was a rock star as some of the nurses would say. To learn more about Gracynn’s NICU experience, read her Picture of Hope story here.
I do have to say Harley’s journey was very difficult for us as a family and Gracynn’s was not as difficult because we knew what to expect due to this being our second time around. The one person who I felt really understood what we were going through and would answer any question he could was Dr. Malin. Without that man bringing me back to reality many times I would have been a bigger wreck than I was. He was our saving grace each time we were in the NICU.