Being discharged from the NICU is daunting for any parent, especially if the NICU stay has been lengthy and your child is coming home with medical equipment. Your new normal is intimidating, to say the least.
My water broke when I was 20 weeks pregnant and we spent the next three and a half weeks on hospital bed rest. My son, Theo, was born at 23 weeks, 5 days and stayed in the NICU for 113 days. The NICU became our second home and naturally, I leaned on the neonatologists, nurses, respiratory technicians and social workers for information and peace of mind. We were extremely lucky with Theo’s outcomes but still had issues we would need to deal with following discharge including chronic lung disease, Rickets, and retinopathy of prematurity (ROP). Theo came home on oxygen, a pulse oximeter and an apnea monitor…enter our new normal.
Bringing home a preemie is scary. I cried leaving the hospital for the last time because I didn’t want to leave the safety of our NICU world. I was scared I wouldn’t be able to care for my son adequately or use the medical equipment correctly. My fear lessened as I became more comfortable using the medical equipment, asking questions and trying to understand what was going on at ALL* of our doctors’ appointments. But it’s overwhelming, and it’s okay to admit that. Your first few months at home will include doctors’ appointments, appointments with home health aides, social workers, early intervention specialists and a lot of adjusting.
As Theo grew stronger and the medical equipment was no longer needed – best day ever not having to deal with sticking a Pulse Ox probe on your baby’s tiny toe – we learned about resources that would carry Theo through his toddler and preschool years, and onto elementary school.
Theo went to a medical daycare and a special educational program through our public school system for preschool. He received therapies, one-on-one education, and medical attention when it was needed from nurses at school and daycare. As time went on and he grew out of his medical issues, we were discharged from our endocrinologist, our ophthalmologist, our GI doctor and finally our pulmonologist. Moving to elementary school was challenging but we found a great charter school that can give Theo the education and therapies he needs. The transition to kindergarten was difficult for us because the public school system has limited resources as far as individualized education for special needs children. We utilized contacts and resources and were able to find his current school.
Today, Theo is thriving! He is a happy and sweet 7-year-old in first grade. He has a great sense of humor and adores his family. He loves monsters and french fries. He is also autistic and developmentally delayed. He is a challenge and we happily accept his challenges because they make him, him. We deal with behavioral problems, delays in speech and other milestones. These issues may be present his entire life, but he’s worth it. I’m proud of him defeating every odd thrown at him and fighting for all he’s accomplished.
Being a preemie parent changes you. Watching your baby go through horrible pain, uncertainty and struggle changes you in a way I can’t describe. It’s taken me years to really deal with the emotional aftermath of our experience, and every day it’s right at the surface. What we went through is seared in my brain and affects every aspect of my life. Until recently, I’ve felt very overwhelmed by our experience on bed rest and with Theo. I’m getting better at letting other people help me and enjoy the life we have worked so hard for, and I would go through it a thousand more times if it meant we got Theo.
Tips for Life After Discharge
- Utilize your Social Worker. Have them make all of your post-discharge appointments. It makes life so much easier when you’re not calling to schedule.
- Teach your family. Teach other family members how to use any medical equipment your child might have. The more people who are comfortable with the equipment, the better.
- Ask questions. Takes notes, ask questions, discuss the next steps with all of your doctors and therapists.
- Enjoy your baby! You and your baby have made it so far. Don’t forget to enjoy the time you have with him or her.
- Keep adjusting. In my experience, life with a preemie has never gotten easier, just different. Theo’s care is still a full-time job and one that you really have to stay on top of. Use the resources you have, ask other preemie parents about their experiences and keep advocating for your child.
- Get help for yourself. It’s suggested preemie parents are more likely to develop post-traumatic stress disorder (PTSD) following birth. Talk to someone and seek help for yourself. It’s so incredibly important.
- Use your resources. Every contact, social worker, child life specialist, and fellow preemie parent may have knowledge of a therapy, treatment, etc you may be struggling to find.
*Preemies have numerous doctors’ appointments following discharge and for years afterward. We followed up with six doctors monthly for over a year, not including therapy.