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 Chats (Live Video Series) - 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

NICU Stories - Nakiea Wilkinson

With You in the NICU - Canadian Premature Babies Foundation

Small Brains, Big Dreams - Canadian Premature Babies Foundation

Religious and Spiritual Resources

A Letter from God - Father’s Love Letter

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 Chats (Live Video Series) - Canadian Premature Babies Foundation

Preemie Health Talks - Canadian Premature Babies Foundation

Parent Resources - Project NICU

Educational Resources

NICU Grad Podcast - Neena Jube-Desai, MD, MBA FAAP

NICU Stories - Nakiea Wilkinson

With You in the NICU - Canadian Premature Babies Foundation

Small Brains, Big Dreams - Canadian Premature Babies Foundation

Religious and Spiritual Resources

A Letter from God - Father’s Love Letter

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 Chats (Live Video Series) - 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

NICU Stories - Nakiea Wilkinson

With You in the NICU - Canadian Premature Babies Foundation

Small Brains, Big Dreams - 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

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)

Breastfeeding

Breastfeeding the Premature Baby - International Breastfeeding Centre

Breastfeeding the Premature and Sick Baby - International Breastfeeding Centre

Safe Infant Feeding - Fed is Best Foundation

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)

Breastfeeding

Breastfeeding the Premature Baby - International Breastfeeding Centre

Breastfeeding the Premature and Sick Baby - International Breastfeeding Centre

Safe Infant Feeding - Fed is Best Foundation

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 are the settings on my baby’s ventilator? (respiratory support) 

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?

Who can I call if I have questions about my baby’s health after I’m home?

What services are offered to NICU families? Is there a counselor/support group for parents in the NICU?

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 are the settings on my baby’s ventilator? (respiratory support) 

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?

Who can I call if I have questions about my baby’s health after I’m home?

What services are offered to NICU families? Is there a counselor/support group for parents in the NICU?

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 are the settings on my baby’s ventilator? (respiratory support) 

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?

Who can I call if I have questions about my baby’s health after I’m home?

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)

NICU Parent’s Bill of Rights - NICU Parent Network (United States)

*Not to be considered legal advice

Know Your Rights*

A Mothers’ Bill of Rights - Origins Canada (Canada)

NICU Parent’s Bill of Rights - NICU Parent Network (United States)

*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.

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

Cover the Cost of a NICU Stay - American Baby and Child Law Centers

Never Pay the First Bill by Marshall Allen

Cover the Cost of a NICU Stay - American Baby and Child Law Centers

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.

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.

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. 

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. 

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.

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.

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

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 (for babies born premature or sick)

NICU Videos and Stories - Mighty Miracles

Online Communities*

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

For Dads

Dad Central - Canadian website & blog offering parenting resources specifically tailored to fathers)

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)

NICU PARENTS

Published in 2024. Created by Anita Yuen

Content Strategy by Karin Anderson Creative

Graphic Design and Site Build by ketuxdesigner

Logo Design by Arcana Creative

Additional Support from FaithTech

NICU PARENTS

Published in 2024. Created by Anita Yuen

Content Strategy by Karin Anderson Creative

Graphic Design and Site Build by ketuxdesigner

Logo Design by Arcana Creative

Additional Support from FaithTech

NICU PARENTS

Published in 2024. Created by Anita Yuen

Content Strategy by Karin Anderson Creative

Graphic Design and Site Build by ketuxdesigner

Logo Design by Arcana Creative

Additional Support from FaithTech

NICU PARENTS

Published in 2024. Created by Anita Yuen

Text and Content Strategy by Karin Anderson Creative

Graphic Design and Site Build by ketuxdesigner

Logo Design by Arcana Creative

Additional Support from FaithTech