Can you briefly tell us about your NICU experience?   

My daughter was born at 22-5. She was the smallest and sickest baby in our NICU for a long time. We were in the NICU for over a year before being transferred to another part of the hospital.

What was the hardest part about your NICU stay?  

The hardest part of our NICU stay was having to leave the NICU every day without our daughter and trusting strangers to take care of her when we were gone. 

How did you care for your mental health while your daughter was in NICU?   

I’m honestly not sure that I did, but I did have supportive people around me that reminded me to eat and sleep when I otherwise wouldn’t have.

How would you describe the period immediately after your baby was discharged from the NICU? 

Since the period after leaving the NICU, for us, just meant relocating to another part of the hospital; it was aggravating because we felt like our daughter was ready to go home but all of the hospital staff kept fighting it. When our daughter finally was discharged from the hospital completely, she was only home for 3 days because she had picked up a virus from the hospital before discharge. This led her to stay in the PICU for two weeks. We had to once again fight to get her discharged from there. By the time our baby came home we were so exhausted. We had waited so long and fought so hard to get her home, the feeling of actually having her home was and is unexplainable. It’s completely surreal. We were told so many times that we would not make it to this day and it coming just felt so freaking good! 

Do you feel like your family and friends understood what you were going through?  What you are still going through? 

My family has been amazing supportive; they have taken the classes to learn how to assist in taking care of our daughter. I think it was hard for our family and friends to understand the scope of what we were going through, with our micropreemie and Covid visiting restrictions didn’t make that any better. The biggest disconnect with us receiving support from our loved ones, was really that we didn’t know what we needed and what kind of support that we would have accepted. My husband and I both worked multiple jobs while our daughter was in the NICU, partially for distractions. This was our first baby, our first experience with the NICU, our first tumultuous pregnancy – everything was so new to us and we honestly didn’t reach out for help because we are very independent people. 

How is it working with home health nursing?   

Securing home health nursing in our area has been a headache, because of the nursing shortage. We have decided to wait for nursing at home once our daughter is discharged and still have no nursing now. 

How do you balance caring for your child, managing a household and practicing self-care? 

I don’t know, I just pushed myself every day. I made a schedule- I had a set number of hours for when I would go and leave the hospital. I planned things around that time to keep me to that schedule- if there was a situation at the hospital then I would deter from that schedule of course. I was at the hospital every day, I would clean one room of our home every day, I would keep lists of what I needed to get done (at home, questions for the hospital, what friends that I needed to contact and with work). My life was a clearly outlined list. It helped me to get things done when everything that needed to be done was written out for me.

What advice would you give to parents for after their child is discharged from the NICU?   

Enjoy the time with your child! Get all of the cuddle time that is possible. Continue to advocate for your little person.

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