Hand to Hold: Support for NICU Parents

Chelsea Long -

This article was originally published on Whole Mamas. Obviously this topic is near and dear to my heart as a twin mama with a two week NICU stay. Cristal and Christine work with the organization Hand to Hold. Cristal is a Family Support Specialist and Christine is an Ambassador for the organization. Hand to Hold helps families before, during, and after NICU stays and infant loss by providing powerful resources for the whole family, and most importantly, one-on-one mentoring from someone who has been there. We asked them five commonly asked questions and share their answers here!

What are realistic things I can do to take care of myself during my NICU stay, especially if the hospital is far from my home?

Build your support system. Have a team of family and friends at home who can help with care of other children, pets, the house, etc. If you are staying away from home and your partner cannot be with you, see if other family members or friends can spend time with you at the hospital so you are not alone. Ask them to come have lunch with you, even if it is only to the hospital cafeteria.

It is also important to find people who can relate to this unique experience. Take advantage of any NICU groups at your hospital to meet other parents who might be in the same situation. If an on-site support group is not offered, online support can be invaluable. Hand to Hold has a great Facebook page called Hand to Hold NICU Family Forum. We also have Austin and Dallas subgroups for those local families.

Take care of yourself. Pack healthy snacks or lunches to be sure that you’re keeping yourself fed and hydrated. Invest in a reusable water bottle (so you can bring it into the NICU with you). In some locations, Hand to Hold offers weekly support groups with lunch provided. Stop by and meet some other NICU parents and grab a bite to eat.

Take breaks and rest! You are still healing! Ask if there are quiet places you can escape to relieve yourself from the constant noise of the NICU to take a nap or just be still for a bit, such as a courtyard, Ronald McDonald Room/House, ask if you can borrow a pumping room to nap. Don’t feel guilty about leaving the NICU occasionally to spend time with family or friends, or to get things done at home or ready for baby’s discharge.

What resources are available to parents in the NICU?

Educate yourself about the medical staff (other than neonatologists and nurses) who are available to help you navigate the different stages of your baby’s stay. This may include lactation specialists, speech and occupational therapists. Get to know the nurses and ask for primary nurses, especially if you must return to work. Many hospitals also have non-medical NICU staff such as social workers, insurance specialists, and peer support specialists. Set up appointments to make sure you are informed of all benefits and resources available to you and your baby. Ask if there are opportunities for families to meet each other so you can share your NICU journey with other parents and connect with people who understand what you are going through.

Don’t be afraid to ask for help! Ask if a NICU peer support specialist is available. If you are feeling overwhelmed, ask for professional help. A therapist can help you understand your feelings. Not only will therapy help you work through the stresses of the NICU, it will also offer tools to help you deal with future issues. Journaling is a great way to express your feelings and cope with your emotions. A journal is also a reminder of your baby’s journey, and how far they have come since their birth.

Hand to Hold’s NICU Now Audio Support series was produced for NICU parents. Each episode is designed to help you understand and process your emotions, fears, and questions related to your child’s NICU journey. Using your smartphone, computer, or tablet, you can tune in at the bedside or to and from the NICU.

Remember that your NICU stay is adding stress onto an already challenging season. Postpartum Support International is a great resource to connect with mental health resources that are geared for parents dealing specifically with the unique challenges of postpartum. They can connect you with local resources and therapists trained to deal specifically with the unique challenges of this time. They also have an online support group for postpartum mamas.

What are things parents can do to navigate challenges with breastfeeding while in the NICU?

You are your child’s best advocate. Maintain open communication with nurses, lactation consultants, and NICU therapists about your baby’s progress and what your wishes are at each stage. Make sure the NICU always has a supply of your expressed milk. It’s very common to struggle to make enough milk. Inquire about your hospital’s donor milk program, learn about the requirements (usually mom must be pumping) and sign any necessary forms in case you need it.

If you find that your wishes are not communicated from nurse to nurse between shift changes, leave clearly visible notes to all caring for your baby. Voice concerns to charge nurse or senior NICU staff if there are consistent challenges or breakdowns in communication. Remember that you are the primary caregiver to your baby, and don’t be afraid to speak up.

What can parents do to more smoothly navigate the transition from the hospital to their home?

If the NICU has rooming-in options, take advantage of these to spend a night or two with your baby before going home. Take any classes that the NICU may offer you to prepare you for discharge. If going home with any medical equipment, make sure you ask for and receive adequate training before leaving the NICU. If other family members will be taking care of your baby after discharge, ask if they can be present for training and discharge classes as well. Make a list of who to contact for follow up appointments, medical supplies, etc., and when to contact them.

Ask for recommendations for pediatricians who have experience with babies who have been in the NICU. If you’d like, you can interview several pediatricians before you pick one, to make sure you feel comfortable with the office, staff, and healthcare providers. Do your best to establish boundaries with family and friends wanting to visit at home and meet baby. Remind them that your baby is still medically fragile. Hand to Hold has a great downloadable PDF  you can use called “We’re Coming Home from the NICU: 10 Things We Want You to Know.”

If you are local to Austin, TX, Hand to Hold hosts a “Beyond the NICU” Support Group every 1st and 3rd Saturday of the month. This is a great way to receive support and solidarity after the NICU. Find more information here. 

Learn about how to process and heal from a traumatic pregnancy, delivery, or NICU stay from Parijat Deshpande.

I haven’t experienced the NICU. What can I do to support my friend during their NICU stay?

On a practical level, you can offer to be a liaison to communicate with other friends if needed, or create a care calendar to help with other family members, chores, grocery shopping, etc. Purchase gift certificates to nearby restaurants or grocery stores to help shoulder the expenses incurred. Offer childcare for older siblings. As Mom is recovering, offer transportation to and from the hospital if she doesn’t feeling comfortable driving yet.

On an emotional level, be with them if they want or need company; listen to them; validate what they are feeling; educate yourself about their baby’s medical needs, as well as your friend’s emotional needs. Let your friend talk and express how they’re feeling without offering ways to “fix it.”Be respectful about the choices your friend is making regarding their baby’s care, who is allowed to hold, visit, etc. Encourage your friend to practice self-care, ask them if they would like to take a walk outside the hospital, or bring them lunch.

Bonus: Advice from the Whole Mamas Community

We asked members of the Whole Mamas community to share their experience of what was helpful for them when experiencing a NICU stay. Here’s some ideas that they came up with:

  • Clean their house and/or do laundry (or hire a professional service)
  • Tell her when you’re able to watch her older kid(s)
  • Offering times when you can come visit at the hospital
  • Walk their dog (or help them hire someone to do it)
  • Wash and/or purchase preemie/newborn clothes and burp rags and bring them to the hospital (sometimes babies come before you purchase baby clothes or you need a smaller size)
  • Bring healthy food/snacks to the hospital
  • Bring grab and go meals if the parents are working or driving between the hospital/home
  • Make/bring lactation cookies (these are nourishing, comforting, and help supply)
  • Bring a good hands-free pumping bra, if they’re nursing/pumping, and a travel bottle brush kit to help with cleaning pump parts
  • Purchase a gift card to the hospital cafeteria/coffee shop, Postmates, or GrubHub; or just Venmo cash so they can choose how to use it!
  • Purchase parking vouchers or give money for parking if they’re in a big city (the money adds up and is annoying in the grand scheme of things)
  • Purchase a massage gift card or a gift card for a date night for the parents when they feel ready to take a step away and relax for a night
  • Thoughtful gifts like a Kindle, Audible gift card, or a good book, extra chargers and headphones, a blanket or cozy sweater, moisturizer or chapstick
  • Set up a GoFundMe page, if they’re okay with it, to offset some of the costs of the NICU stay
  • Set up a Meal Train to help coordinate friends and family to bring meals
  • Give them space. Sometimes they may not want to share all of the details or be around people. Let them know you’re there, but don’t keep asking for updates