Resources Every NICU Family Should Know



Every family needs a little extra help and support now and then. This is especially true for NICU families.

When your baby needs specialized care, your world is turned up-side-down. How do you manage your baby’s care? What do they need? How do you pay for it? Will insurance cover the costs? It can be overwhelming. But Hand to Hold can help. We are families just like you. We want you to know:

  • You are not alone
  • You don’t have to do this by yourself
  • It’s ok to ask for help

Here is a list of resources that we think every family needs to know about. We encourage you to learn about these programs and resources that can help your family. It is worth the investment! 

Help with Nutrition and Feeding

NICU babies need extra nutrition. “Catching up” is hard work, but there are programs and people that can help your baby reach their goals. There are programs that promote good nutrition to support your baby’s growth.  There are smart professionals who can work with you to resolve any feeding problems your baby might have. And there are special benefits and support available for moms who are pumping and breastfeeding.

Programs That Can Help

WIC is a nutrition program for women, infants, and children. WIC helps with the cost of groceries and special formulas. WIC also provides peer breastfeeding counselors and may be able to lend you a high-quality breast pump. Dads can apply for benefits for their family too. Call  1-703-305-2060 and visit to learn more.

The Affordable Healthcare Act (ACA) requires health plans to cover breastfeeding support and supplies, including lactation consultants. Call your insurance provider and ask how to use your coverage. Then visit to find out about this and other benefits.

Professionals Who Can Help

Dietitians will help you make sure your baby’s nutritional needs are being met. Visit and ask your baby’s doctor for a referral if you think a dietitian can help. READ What Does a Dietitian Do?

Lactation Consultants (IBCLCs) can answer your breastfeeding questions and help you with any challenges you or your baby have. Talk to your insurance provider or visit for help. READ What Does a Lactation Consultant Do?

Speech and Feeding Therapists can help you prevent, diagnose, and treat feeding problems, which are very common in NICU graduates. Ask your baby’s doctor for a referral and visit asha.orgREAD When Your Preemie is Struggling to Eat

Support for Healthy Development

© Petrenko

© Petrenko

Early Intervention services provide support and resources when they can benefit your baby the most. You don’t need to wait until there is a problem to ask for help. READ Understanding Your Child’s Development: What Are Milestones?

Programs That Can Help

Early Intervention is a state-run program for families with children, birth to three, with disabilities and developmental delays. Early Intervention programs provide therapy services and work with families to help their babies reach their potential. Call the Early Childhood Technical Assistance Center at 1-919-962-2001 to get the phone number for your state program. Then call your state program or local school district to set up a free developmental assessment. Visit for more information. READ What Does It All Mean: Why Do We Track Milestones Anyway?

Professionals Who Can Help

Your Pediatrician will coordinate your baby’s routine medical care. They will also do developmental screenings, offer guidance, and make referrals to specialists and therapists who can help. Visit the American Academy of Pediatrics website for families and

Speech, Physical, and Occupational Therapists provide therapy and interventions that help your baby move, communicate, grow, and thrive. They can work with you to make a plan so that you and your family can support your baby’s progress at home. Visit


Ways to Pay for the Help Your Family Needs

Money Tree


The NICU is expensive. And the care you need once your baby goes home is also expensive. The families at Hand to Hold have been where you are now – and we know how important it is to get financial help. No family should face financial disaster because of the care their baby needs.

READ How to Pay for Your NICU Stay. Then ask to talk to your NICU social worker or case manager.  They have experience navigating the system. They will know which programs or benefits your baby and family qualify for.

Your hospital and doctors can help too. Talk to your NICU’s  hospital billing office about financial assistance programs. Ask if your doctors and therapists are “in network” providers under your insurance. This can make a big difference in how much you are billed. Once the bills start arriving DON’T PANIC. Most of the time the amounts will change as insurers start to pay their share and negotiate costs with your providers.

Before you begin paying any NICU bills, make a budget and figure out how much you can reasonably pay each month. Pay your other bills like rent, mortgage, car payments, food, and utilities first. In other words, take care of the things that are essential for your family before paying medical bills. You can find more information and free case management at the Patient Advocate Foundation website or by calling them at 1-800-532-5274.

Reducing Your Costs

You can’t always budget for unexpected medical emergencies like a NICU stay. But you can plan your health care spending like you plan other purchases. It just takes time, patience, and persistence.

Negotiate Payments The prices hospitals and providers charge aren’t based on their actual costs. Contact them as soon as you get the bill and ask for discounts and a payment plan.

Ask About the Price It’s ok to ask how much specialists, therapy, medicines, and equipment cost before you use them. Ask if there is a less expenses option that can give you the same results.

Get Advice from Other Parents If you would like to talk to another parent visit Life After NICU Hand to Hold’s place for parents on Facebook, request a Helping Hand peer mentor, or email support [at] handtohold [dot] org.

Applying for Assistance

Most NICU babies qualify for some form of Medicaid assistance. Some programs allow your baby to receive Medicaid even if your family doesn’t meet its strict income limits and financial guidelines. Even if you also have private health insurance coverage, Medicaid is good secondary insurance. It helps cover costs when you meet your annual limits on treatments and therapies with your primary insurer. Other programs can help you pay your private insurance premiums, deductibles, and co-pays.

Social Security Disability Benefits Social Security provides benefits and Medicaid to certain infants born with a low birth weight, whether or not they are premature. Call 1-800-772-1213 to inquire.

Medicaid health insurance is provided at no cost to qualifying families. Your child may qualify based on your income, their birth weight, or their medical diagnoses. Visit Then click here to find your state’s program.

Children’s Health Insurance Program (CHIP) is designed for families who earn too much money to qualify for Medicaid, but can’t afford private health insurance. You pay monthly premiums and a small fee for doctor visits, prescriptions, and emergency care. Your fees and co-pays are based on your family’s income. Call 1-877-543-7669 and visit to learn more.

Medicaid Expansion Federal and State agencies are working together to expand Medicaid coverage. This means that more families can qualify for benefits or buy-in to the Medicaid program when they think it is the best program for their needs. Visit to find out more.

Help with Insurance Premiums Health Insurance Premium Payment programs (HIPP) and the Affordable Care Act (ACA) help some families with the cost of paying for insurance. Learn about HIPP in your state by contacting your Medicaid office. Then visit for more help. You can also call 1-877-KIDS-NOW (1-877-543-7669).

Resources for Working Parents

Balancing the demands of NICU and work can be especially challenging. Don’t wait. Talk to you employer. Explain what you need and how they can help. The best employers will support you and accommodate your family’s needs. But other employers might not be willing to help. So it’s important to know your rights.

©fotolia/diego cervo

©fotolia/diego cervo

Family Medical Leave Ask your employer whether or not your place of business offers time off through the Family Medical Leave Act(FMLA). Visit to find out more. READ The Employee’s Guide to the Family Medical Leave Act.

Temporary Disability Benefits Some employers and private insurance plans offer temporary disability insurance. Learn how short term disability benefits can help with maternity leave, and when medical events prevent you from working. Check your plan and call the U.S. Department of Labor, Wage and Hour Division at 1-866-4US-WAGE. (1-866-487-9243) or visit

The Health Insurance Marketplace Individuals, families, and small business owners can explore all of their health insurance options in one place. Visit the website, or call 1-800-318-2596.

COBRA When you leave a job, you may be able to keep your employee health coverage for up to 18 months. This is called COBRA, or continuation of health coverage. With COBRA, your former employer no longer pays your insurance costs. You pay the monthly insurance premium yourself, plus other fees.To find out more about COBRA and whether or not it is a good option for your family visit or call  1-866-444-3272 and talk to a Health Benefits Advisor at the Department of Labor.


Did you find the information here helpful? Please consider making a donation to Hand to Hold so that we can continue to educate and support NICU families. donateonline


  1. Charity Bankhead says:

    If my baby is out of the NICU now, is it possible that Medicaid will pay for his NICU stay even if we apply after he is out?

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