General Resources
Glossary of Terms
Common Terms - Nationwide Children’s
Educational Resources
Living in the NICU - Canadian Premature Babies Foundation
Education - Canadian Premature Babies Foundation
Preemie Health Talks - Canadian Premature Babies Foundation
Parent Resources - Project NICU
Podcasts
NICU Grad Podcast - Neena Jube-Desai, MD, MBA FAAP
Hand to Hold NICU Babies Parent Support - Hand to Hold
NICU Stories - Nakiea Wilkinson
With You in the NICU - Canadian Premature Babies Foundation
Religious and Spiritual Resources
A Letter from God - Father’s Love Letter
Breastfeeding
Breastfeeding the Premature Baby - International Breastfeeding Centre
Breastfeeding the Premature and Sick Baby - International Breastfeeding Centre
Safe Infant Feeding - Fed is Best Foundation
How to Avoid or Overcome Common Breastfeeding Complications - The Thompson Method
NICU Baby Steps to Grow Parent Resource Book - The Tippett Foundation (pages 55-68)
Mother to Baby (Educational resources on the safety of medications and other exposures during pregnancy and breastfeeding)
Questions to Ask
After Birth
When can I see & hold my baby?
What’s the maximum amount of kangaroo care/skin-to-skin we can provide daily? Why? Why not more?
Is it my right as my child’s parent to see/hold them when I want?
Is it my right to leave my hospital room to see my baby? (If you’re in a different ward from your baby)
Who can help me get to the NICU if the maternity ward nurse is not able to help me? (If you need to be wheeled and cannot walk)
How can I get in touch with my doctor? How can I talk to the head nurse?
In the NICU (For the Medical Team)
Why is my baby here? How long will my baby be here?
How long can I stay here with my baby? Can I sleep here? For how long?
Will I be able to breastfeed or bottle-feed my baby? If so, how often and how?
What is my baby’s daily care plan? Can I please see today’s care plan?
What changes have been made since yesterday for my baby’s ventilator setting, IV fluids, etc.?
How many times has my baby had a bowel movement today? Can I please see the record?
Is it life-threatening to keep my baby outside the incubator for (x) more minutes to hold them? Why? Is this also recommended by the doctor? What are other options if I cannot hold my baby?
Always ask “why?” when a doctor or nurse is performing a medical procedure. If it doesn’t feel right to you, ask if there is an alternative or if it can wait until you get another opinion.
After Discharge
What are conditions for my baby to be released to go home?
Are there any special instructions to care for my baby at home?
When should we see a pediatrician after discharge?
What are the signs or symptoms I should look for to know if my baby needs to see a doctor?
What services are offered to NICU families? Is there a counselor/support group for parents in the NICU?
Know Your Rights*
A Mothers’ Bill of Rights - Origins Canada (Canada)
*Not to be considered legal advice
Financial Resources
Costs for a NICU stay can include: hospital bills (main cost), food, transportation, parking, pumping accessories etc. In the United States, costs will vary by hospital and state. Depending on your health plan and coverage and your child’s length of stay, you may have to navigate challenges with your baby’s health insurance and things you did not expect to have to pay for.
Accommodations
If your baby is in the NICU for an extended time, you may need to stay closer to the hospital.
Inquire with your hospital social worker about whether you qualify for the Ronald McDonald House program. They provide a place to stay for parents of critically ill children (in Canada), or parents of in/out-patients of a hospital.
Ronald McDonald House Charities (United States)
Ronald McDonald House Charities (Canada)
Find out if local government offers accommodation subsidies. For example, in British Colombia, the BC Family Residence Program offers accommodation subsidies for families with children receiving medical care at BC Children’s Hospital or Sunny Hill Health Centre for Children. The BC government also maintains a list of hotels that offer discounted accommodations for families with children receiving medical care.
Paying the Bill
Never Pay the First Bill by Marshall Allen (United States)
Cover the Cost of a NICU Stay - American Baby and Child Law Centers (United States)
Paying for Your Baby’s NICU Stay - March of Dimes (United States)
Additional Tips:
Billing Errors: If you suspect a bill contains an error, call the entities involved - hospital, insurers, your employer’s HR, and/or other providers. Most states have a department of consumer services that help file a complaint with the oversight entity. If an issue cannot be resolved properly, and if necessary, tell the medical providers you are reporting them to the state.
Long-Term Care Prep: If your child has perinatal asphyxia, or any chronic illness (e.g. blindness, deafness, asthma, attention-deficit disorder, mild cerebral palsy, etc.), you will have to manage long-term costs to meet their medical, educational, and social needs. Please discuss options with your hospital/physician/social worker.
Saving Receipts for Taxes: Depending on how far away you live from the hospital, you may be able to deduct certain expenses from your taxes. Be sure to save all receipts from your hospital stay.
Government Assistance
Government Assistance for Premature Babies - Growing Family Benefits
In Canada, regional governments may offer various types of assistance. For example, transportation assistance may be available for families coming from rural areas to receive medical care.
Non-Profit Assistance
Colette Louise Tisdahl Foundation - Offers financial assistance to families in crisis due to high-risk/complicated pregnancies, premature birth/NICU stays, or loss
NICU Helping Hands - Offers financial assistance with grocery, restaurant, and gas expenses
Peer Support and Online Communities
Stories from Other Parents
Stories from the Neonatal Unit - Neonatal Stories/Julia Petty
Your Stories - Bliss
NICU Videos and Stories - Mighty Miracles
Online Communites*
Hand to Hold - (Support groups, peer-to-peer mentoring, bereavement support, counseling, and resources)
Project NICU - (Support groups, online communities, mentoring, and blog)
Grahams Foundation - (Care packages, mentorship, app, and resources)
*Ask your hospital if they have a Facebook group for their NICU parents. For example, St. Michael’s hospital in Toronto Canada has this group.
Local Resources
Each state and city may have local resources for NICU parents at your baby’s hospital or community. Ask your baby’s hospital. Here are a few local resources as an example:
NICU Helping Hands - Offers peer mentorship in Fort Worth, TX
Bee Mighty - Offers peer mentorship in North and South Carolina
Eve’s Victory - Offers free care packages for NICU parents in Saint Thomas, PA
Grief Support
Baby’s Breath - Canadian website offering grief support for parents experiencing the loss of an infant
Support System
For Dads
Dad Central - Canadian website & blog offering parenting resources specifically tailored to fathers)
For Friends and Family
10+ ways to support a friend with a preemie - Today’s Parents
10 Ways to Help NICU Parents - Seleni
Canada-Specific
Recommended Resources - Canadian Premature Babies Foundation (resources listed by Canadian provinces)
EI Caregiving Benefits - Government of Canada (employment insurance benefits for caregivers of critically ill children)
Child Disability Benefit (CBD) - Government of Canada (you may qualify for caregiving benefits through the EI program if you are caring for a child who is disabled as a result of a birth injury or other complication)
Canadian Hearing Services, (877) 347-3427 / (877) 347-3429
Canada Easter Seals, (416) 932-8382 (for children with physical disabilities)