The NICU Support I Wish I’d Had – Kayleon’s Story

October 28, 2019

I gave birth to my beautiful little lady at 29 weeks gestation, and we spent 43 days in the NICU. Fortunately, my daughter did not face any complications, diagnoses or surgeries. However, as many NICU parents can attest, the NICU experience is traumatic regardless of whether those things are faced.

kayleon Dortch-Elliott, hand to hold, NICU stories, NICU mom, baby feet
Photo courtesy Kayleon Dortch-Elliott

Our daughter is almost six months and she is doing incredible! She is the perfect addition to our little family; we have the sweetest and most joyful of days with her. Like many, I came across Hand to Hold online through articles posted in support groups on Facebook. I did not receive any Hand to Hold services while my daughter was in the NICU, and I was not even aware that these services were available. Looking back, I wish I had.

The only support my husband and I received while in the NICU and after being discharged was from our doula. She checked on us via phone calls, text, and in person. She provided awesome postpartum support for me and continues to provide support for us now. Other than doula services, we did not receive support from within the NICU nor any postpartum support once our daughter was discharged. Not only was paying for food, gas, parking, and other expenses financially taxing, but having to pay for extended doula services could have been avoided if more support was made available in the NICU.

There are three things in particular that would have been beneficial to my husband and I if made available:

  1. Free parking – We paid $80-$100 every week for parking, not including gas.
  2. At least two free meals daily – Since I am a breastfeeding mom, I was given a Freedom Pay card each day with a credit, but it did not cover a full meal, and my husband almost always had to pay out of pocket. While I appreciated the credit, we still had to factor in cafeteria food costs as a daily expense. Additionally, I felt guilty because what about non-breastfeeding moms?
  3. Mental health support – There were no psychological services offered to us while in the NICU. We are still working through some emotions and experiences we did not have the opportunity to process while our daughter was in the NICU. We were back and forth each day from our home to the NICU, emotionally traumatized and burned out.


kayleon Dortch-Elliott, hand to hold, NICU stories, NICU mom
Photo courtesy Kayleon Dortch-Elliott

The toughest part about coping has been realizing that while I did experience a great deal of trauma from our daughter being in the NICU, it was the lack of family support that almost led me to postpartum depression. With that being said, friends and family members can best support a family in the NICU by respecting parent’s wishes, being there for support, and asking, “What do you need?” before anything else. Additionally, I would encourage family and friends of parents going through the NICU to do research. While it would be ideal for parents to catch family and friends up on everything right away and educate while in the NICU, it isn’t always realistic, as parents are trying to process everything themselves.

There are a few things I learned from my experience that I’d like to pass on to parents currently going through the NICU. First, don’t be afraid to advocate for your baby. Secondly, get a therapist. Thirdly, ask questions repeatedly. If it helps you cope or process, ask. Even if you just asked the day nurse and now it’s night shift, ask again. There are a ton of new terms that will be thrown at you and sometimes you may not want to ask because it might sound silly, but you are new to this. It’s okay to ask questions. Fourthly, request primary nurses. This will save a lot of trouble. Finally, grace yourself and give yourself permission to feel. Don’t suppress your emotions; do whatever you have to do to handle them in a healthy way. You’ll soon find out that despite what it looks or feels like, you are so much stronger than you think.


hand to hold peer support

Would you like to talk to another parent who has been where you are now? Sign up to be connected with, and supported by, a trained, volunteer peer mentor. You are not alone.

About the author

kayleon Dortch-Elliott, hand to hold, NICU stories, NICU mom, by grace not perfection

Kayleon Dortch-Elliott is a wife, NICU mom, author and founder of By Grace Not Perfection LLC. She strives to encourage and motivate all women with their personal development, emphasizing self-reflection, self-care and rest through motivational speaking, writing and providing inspirational resources. Her 45-Day Keepsake Journal for NICU Mamas is available for purchase on her site or on Amazon.