Hand to Hold's Official Blog: Written by Parents for Parents

The Freedom to Choose: Finding the Right Home Health Care Preemie Provider

Shortly after our daughter was discharged from the NICU we received a call from our home health agency. We were assigned a nurse who came to our house regularly for weight checks and to administer her monthly dose of Synagis. Our nurse was amazing, providing us with the reassurance that all NICU parents need, while at the same time giving us beneficial support and feedback. Along with our nurse, the agency also sent out a team of therapists (speech, occupational, and physical) to evaluate Isabella and assess which services would be most helpful to her. Right away it was evident that she needed a physical therapist to help strengthen her muscles and, as parents, we needed to be educated on how to help as well.

23 weeker walking

After lots of physical therapy, Isabella walks all over town.

During the first visit with our physical therapist I had a gut feeling that it really wasn’t a good fit for our family. I couldn’t quite put my finger on a specific reason, but I just didn’t feel the connection. Of course, I instantly quieted my doubts with lots of self talk, and convinced myself that at the next visit I’d feel differently. But at the next visit, my doubt grew, yet I didn’t know what to do. How could I tell our therapist that I didn’t want her to come treat my daughter anymore? Did I have the right to request a new therapist? What if I was just over-reacting, or being too sensitive and still reeling emotionally from our long NICU stay? As the weeks went by, and I continued to let this woman in my house, I grew more and more resentful. Resentment was compounded by guilt, and I was beginning to feel defeated. Hadn’t our NICU journey taught me about advocating for my daughter? Why was I struggling with something that was relatively easy to fix?

When I finally called the agency, I did not give a detailed explanation of how I was feeling. I simply let the case manager know my concerns and requested a new therapist. I simultaneously patted myself on the back for finally making the call, and scolded myself for waiting so long to remedy the situation. I realized I had been overwhelmed during our transition to home. Unlike her hospital stay, where the doctors, nurses and therapists were already determined by who the hospital hired, I suddenly had the freedom to choose who we wanted to be a part of her healthcare team.  I had options. So we began working with a new therapist and it felt great. Even Isabella seemed pleased with the change. Her progress became more evident and the new therapist’s enthusiasm and encouragement better suited our needs.

My journey into motherhood has been filled with fear and anxiety, and learning to sort things out in my head and my heart has proven to be a difficult task. I am still learning to trust that gut feeling when making decisions about my daughter. As with the entire process of prematurity, everything was new to me. In navigating this foreign, uncharted territory I learned so much about myself. I discovered I don’t like confrontation and that I want everyone to like me. More importantly though, I realized that it’s my job to do what’s best for my daughter. By speaking up, I give her a voice. And I become a more active participant of her healthcare team.

 

Articles You May Be Interested In:

Rachel Pasquale About Rachel Pasquale

Rachel Pasquale (ME) is the mother to Isabella, her only child, born at 23 weeks, weighing 1 pound 6 ounces. After 107 days in the NICU she and her husband welcomed home a healthy baby. Despite being well supported during her entire journey, Rachel felt a profound sense of isolation, often feeling that those around her did not truly understand what she was going through. Her desire to help herself and others feel less lonely navigating the NICU led her to Preemie Babies 101. In addition to contributing to this website, Rachel is a member of the NICU Family Advisory Council at the hospital her daughter once called home. You can contact her through Facebook or via email.

Comments

  1. it’s really nice to read the whole article.

Speak Your Mind

*