Helpful Tips for Families of Preemies
Preemies Today has developed a list of resources to support families of preemies from their time in the NICU through childhood. This is not an exhaustive list of all providers, but ones our members have used now or in the past. Your healthcare provider is a great resource for finding doctors and medical support, and always check to be sure the resource is a good fit for you and your preemie by asking questions about your particular situation. Also, be sure to find out if the resource can be covered or partially covered by insurance to limit out of pocket expenses.
Please check out our Helpful Tips for Families of Preemies!
If you have additional resources you would like to share with us, or updates to the lists below, email us at info@preemiestoday.org.
Pediatric Medical Specialists
Specialty |
Practice Name and Contact Information |
|---|---|
Cardiology |
Pediatric Cardiology Associates Yorktown 50 Alan Benheim, MD |
Cardiology |
Children’s Cardiology Associates 8318 Arlington Blvd # 250 Patrick Callahan, MD
|
Cardiology |
Georgetown Pediatric Cardiology Associates Thomas Hougen, MD |
Cardiology |
Shabib Alhadheri, MD |
Gastroenterology |
Loudoun Medical group 21785 Filigree Court, Suite 201 Scott Sirlin, MD |
Gastroenterology |
Gastroenterology Associates of Northern Virginia, Ltd. Fair Oaks Herndon 100 Elden Street Suite 12
Rockville 15005 Shady Grove Road Suite 120 Catherine Chao, MD |
| Lactation | Northern Virginia Lactation Consultants |
Neurosurgery |
INOVA Fairfax Hospital for Children’s Specialty Center (703) 970-2600 Gary Magram, MD |
Neurology |
INOVA Fairfax Hospital for Neurology 8505 Arlington Blvd., Suite 100 Virginia E. Elgin, MD
|
Neurology |
William M. McClintock, MD 8501 Arlington Blvd., Suite 200 |
Nutrition |
Sheree Hughes Virginia |
Nutrition |
Kelly Dorfman, M.S., L.N.D. Maryland |
Ophthalmology |
Pediatric Ophthalmologists of Northern Virginia 1515 Chain Bridge Road 11713 Bowman Green Drive 3650 Joseph Siewick Drive, Suite 102 6231 Leesburg Pike, Suite 608 6355 Walker Lane, Suite 405
David Seidman, MD |
Ophthalmology |
Stephen R. Glaser M.D. P.C. 15235 Shday Grove Road Suite 101 |
Ophthalmology and Retinalogy |
Edward Parelhoff, MD 2296 Opitz Blvd. |
Ophthalmology and Retinalogy |
The Retina Group of Washington 8316 Arlington Blvd., Suite 424 5454 Wisconsin Ave., Suite 1540 Manfred VonFricken , MD |
Ophthalmology and Retinalogy |
Toufic Melki , MD 1520 Shady Grove Road, Suite 302 1715 North George Mason Drive, Suite 103 |
Ophthalmology and Retinalogy |
Kaiser Ophthalmology (703) 922-1298 Joseph Territo, MD |
Perinatology |
Perinatal Associates of Northern Virginia 3020 Hammaker Court, Suite 501 Alfred Khoury, MD |
Perinatology |
Alessandro Guidini, MD Alexandria Hospital |
Perinatology |
Maternal Fetal Associates Sterling , VA Moustafa Hassan, MD |
Perinatology |
Thomas Pinckert, MD (301) 279-6060 |
Perinatology |
Moustafa M. Hassan, MD, AFCOG Director of Perinatology HolyCross Hospital |
Pulmonology |
Pulmonary Lung Center 2730-A Prosperity Avenue 19450 Deerfield Avenue Sunil Kapoor , MD |
Therapy and Early Intervention
There are private, county, and state options for obtaining therapy for your preemie. Below is a list of therapy contacts.
Type of Program |
Name and Contact Information |
|---|---|
Infant Toddler Connection Virginia
|
The Infant Toddler Connection is funded by state and local governments and provides early intervention support and services to children ages 0-3. Children must have at least a 25% delay in one or more areas of development to qualify and may receive speech therapy, physical therapy, occupational therapy, or nutrition services as determined by their Individual Family Service Plan (IFSP) team. Parents pay for services on a sliding-fee scale. |
Infant Toddler Connection Virginia
|
Alexandria City Parent Infant Education (PIE) Contact Person: Debra Gibson 517 N Street Asaph |
Infant Toddler Connection Virginia
|
Arlington Parent Infant Education (PIE) Margaret Jones, Director Department of Human Services - PIE |
Infant Toddler Connection Virginia
|
Fairfax/Falls Church (703) 246-7121 Allan Phillips, Director 3750 Old Lee Highway |
Infant Toddler Connection Virginia
|
Rappahannock Area Communities Services Board Fredericksburg and Counties of Stafford, King George, Spotsylvania, Prince George, and Caroline Contact Person: Allison Standring – Coordinator 600 Jackson Street |
Infant Toddler Connection Virginia
|
Loudoun County Parent Infant Education (PIE) Contact person: Marilyn Hoexter 102 Heritage Way, Suite 305 |
Infant Toddler Connection Virginia
|
Prince William PIE (Includes Prince William County, Manassas City, and Manassas Park) Contact Person Linda Hutton 15941 Cardinal Drive 8007 Ashton Ave. |
Early Intervention District of Columbia |
Washington DC DC-Early Intervention Program Services |
Infant Toddler Program Maryland |
Maryland State Infant and Toddler Program Maryland Infant and Toddler program provides support and services from birth through age two. To find an Infant and Toddler program in your Maryland area call (800) 535-0182. |
Infant Toddler Program Maryland |
Montgomery County 51 Monroe Street |
Infant Toddler Program Maryland |
Prince George ’s County 9201 Basil Court, Suite 440 |
Child/Infant Development Program |
Some preemies leave the hospital and do not yet qualify for early intervention services. You can take your child to a local health care center in Fairfax County to get regular evaluations of your child’s development to determine if they qualify for services from the Infant Toddler Connection. Fairfax County Infant Development Program Falls Church (703) 534-8343 Herndon (703) 481-4242 Springfield (703) 569-1031 Mount Vernon District Office (703) 704-5203 Joseph Willard Health Center (703) 246-7100 |
Child Find |
Preschool Child Find is a part of the public school system and serves as a resource for preschool children and their families by providing services in the home or in various local elementary schools for children that qualify starting at age 3 through age 5 |
Child Find Virginia |
Virginia Alexandria (703) 824-6708 Arlington (703) 228-6042 Fairfax County Falls Church City (703) 248-5655 Prince William County (703) 791-8857 Manassas City (703) 257-1152 Manassas Park (703) 392-1317 |
Child Find Maryland |
Maryland Montgomery County (301) 929-2222 Prince Georges County (301) 808-2719 |
Child Find District of Columbia |
Washington DC (202) 727-8300 |
Private Therapy |
The Children’s Therapy Center Speech, occupational, and physical therapy 8348 Traford Lane, Suite 200 (703) 569-7500 100 Carpenter Drive, Suite 140 (703) 707-9022 |
Private Therapy |
Step by Step Pediatric Therapy Services 14527 Picket Oaks Road Provides home-based physical or occupational therapy |
Private Therapy |
Susan Falk-Muten and Associates Speech Therapy for children with language and feeding needs 11710 Bowman Green |
Private Therapy |
The Kids' Communication Center 4904 Wisconsin Ave. , |
Private Therapy |
Sense-Ational Playtime, LLC 12122 A Heritage Park Cr., |
Private Therapy |
Stepping Stones Therapy 4300 Montgomery Ave., Suite 303, |
| Private Therapy | Reston Speech and Language Center 626 K Grant Street Herndon, VA 20170 703-904-8334 www.restonspeech.com |
| Private Therapy | Progressive Pediatric Physical Therapy |
Medical Supplies and Preemie Products
Resource |
Contact Information |
|---|---|
Apria Home Medical Provides oxygen and other related services |
5701 C General Washington Drive
Beltsville |
Roberts Home Medical Providers of durable medical and oxygen |
Northern Virginia 20465 Seneca Meadows Parkway |
Mid-Atlantic Home Medical |
Manassas , VA
Fredricksburg , VA Falls Church , VA 22041 |
The Orthotic Prosthetic Center – Serving Northern Virginia, Washington DC and Baltimore Providers of pediatric foot orthotics |
www.orthoticprostheticcenter.com/
8330 Professional Hill Drive 5810 Hubbard Drive |
Orthotics |
Many private pediatric therapy offices can cast and fit children for orthotics. Private therapy offices can be considerable less expensive than an orthotist. Be aware some orthotists may not see pediatric patients. |
Tummy Tunnels Clothing especially designed for children with g-tubes. |
|
Hatchback Footware These are shoes made especially for foot orthotics |
|
Baby Builders A unique exercise program created by a physical therapist for preemies |
|
Therapy Shoppe Numerous therapy items recommended by your child’s therapists |
|
Handwriting Without Tears Many school-aged preemies suffer from handwriting difficulties due to low-tone and poor fine motor coordination. This learning strategy was developed by an OT and is used in therapy centers and in many schools systems. It can greatly decrease handwriting frustration. |
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Signing Time! A sign language video series for hearing children. Sign language can help children communicate before they can even speak. Many preemies suffer from speech delays. Signing Time can help your child communicate at an earlier age and help them develop a larger vocabulary. Plus it is a lot of fun with great dance music for you and your child.
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Soothie Pacifier This pacifier is similar to the one given in the NICU. This site has other products related to feeding, positioning, and books related to prematurity. |
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The Tucker Sling This sling helps elevate your baby while they sleep and holds them in place in their crib. Parents that have had a baby with severe reflux have found this product very helpful. |
|
| OxyPhone Help you child breathe easier with the nebulizer phone. |
State and National Resources
Resource |
Description |
|---|---|
Virginia Care Connection for Children (CCC) |
Care Connection is sponsored by the Virginia Department of Health. It provides state-wide centers to assist families with health insurance, access to special medical care, information on community resources, assistance in coordinating care and services, and family support. |
Family Involvement Project (888) 604-2677 |
The Family Involvement project is a program of the Arc of Virginia. FIP focuses on involving families to improve the early intervention program by creating and training parents to work on state review teams. |
Children with Special Health Care Needs Virginia Department of Health |
The Children with Special Health Care Needs (CSHCN) Program promotes the optimal health and development of Virginia's children with special health care needs by working in partnership with families, service providers, and communities.
|
March of Dimes |
The March of Dimes is in the middle of a five year project to help fight prematurity through research, education, and advocacy. You can help the March of Dimes fight prematurity by participating in such events as Walk America, the March of Dimes biggest fundraiser. Check out their website to find out more ways you can support the March of Dimes. |
National Dissemination Center for Children with Disabilities (800) 695-0285 |
NICHY is funded by the federal office of Special Education Programs of the Department of Education and provides families with information and resources for toddlers and children with disabilities. |
ADD/ADHD Children and Adults with ADD/ADHD (CHADD) (800) 233-4050 |
CHADD works to improve the lives of people affected by AD/HD through leadership advocacy, research and education, and support. |
Autism Commonwealth Autism Services (800) 649-8481 |
Provides leadership in the implementation of a statewide system of services to maximize the potential and quality of life of Virginians with autism. |
Cerebral Palsy United Cerebral Palsy of Washington DC/ Northern VA (202) 269-1500
United Cerebral Palsy of Southern/Central Virginia (757) 497-7474 |
UCP is the leading source of information on cerebral palsy and is a leader in advocating rights of persons with disabilities. |
Visual Impairments Childs Hope for Sight (804) 938-1624 |
CHS is a non-profit of parents, professionals, and other persons with the common objective to providing support and service to the parents of children with visual impairments in Virginia. |
Hydrocephalus Hydrocephalus Foundation, Inc. |
HYFI is a non-profit dedicated to providing support, education resources, and resources to patients and families affected by hydrocephalus. |
The State Children's Health Insurance Program (SCHIP) |
Every state in the nation, has a health insurance program for infants, children and teens. The insurance is available to children in working families. The states have different eligibility rules, but in most states, uninsured children 18 years old and younger, whose families earn up to $34,100 a year (for a family of four) are eligible. The State Children's Health Insurance program (SCHIP) can pay for doctors visits, immunizations, hospitalizations, and emergency room visits. |
Preemie Parent Support Organizations
Are you looking for a preemie parent group in your local area or online? If you would like your group added to our list email us at info@preemiestoday.org
Resource |
Description |
|---|---|
Fairfax County Public Schools Parent Resource Center 2334 Gallows Rd. , |
Provides, resources, trainings, and seminars for families of children participating in Fairfax County Public School special education programs. |
The Parents' Place of Maryland |
Helps families with children with special needs in Maryland with information, workshops, technical assistance, and healthcare information . |
Developmental Delay Resources |
A nonprofit group dedicated to working with children with disabilities. They provide information, resources, and conferences for parents. |
Preemie Care PO Box 306 |
Services: Preemie Parent support in NICU and Post-NICU. Preemie Care is a division of MOST (Mothers of Super Twins) |
(MOST) Mothers of Super Twins PO Box 306 |
Services: International non-profit organization providing network opportunities for families of twins, triplets and quadruplets. |
The Tiny Miracles Foundation Old King’s Highway North, #189 |
Services provided: preemie parent support in NICU and Post-NICU, Parent Resource Room, and Parent Support Groups |
Family Networks |
Family Networks provides Maryland families with a comprehensive site with resources and information for parents with special needs children. |
Spenser’s Hope 904 Chesapeake Drive |
Services Provided: Educational brochures, preemie quilts to local NICU, and affirmation of life services. |
SA Preemies (South African Preemies) http://www.sapreemies.za.org/about/home.htm Contact: info@sapreemies.za.org |
Services Provided: Telephone Support, Individual Support, Yahoo Group, Nursing Support Group, Professional Forum |
Sidelines (888) 447-4754 |
Sidelines National Support for high risk pregnancies and women on bedrest |
CaringBridge |
CaringBridge offers free, easy-to-create web sites that help connect friends and family when they need it most. |
| ParentingPreemies.com www.parentingpreemies.com |
An online support group for families affected by prematurity. |
Books
Title |
Description |
Author |
|---|---|---|
Coming to Term: A Father's Story of Birth and Continued Existence |
Coming to Term is a father's first hand account of the premature birth of his daughter, and her subsequent four month experience in the hospital's NICU. In 1997, twin girls were born to William and his wife Kim. Due to complications from a pregnancy related syndrome known as HELLP, the babies were born very premature at 24 weeks gestation. The smallest, Nina, died soon after birth. However, Josie, weighing a scant one pound 2 ounces, survived, coming home with them after 125 days in the hospital. | William H. Woodwell |
Infant Massage - A Handbook for Loving Parent |
This book gives a concise summary of the research supporting infant massage and why it is important. It goes into great detail on how exactly to do a great infant massage. The last part of the book is dedicated to handling special cases such as premature infants. The photos are great for helping to understand what massage techniques the author is describing. | Vimala McClure |
Kangaroo Care |
The authors have written a comprehensive book explaining kangaroo care, which preemies are suitable and why not all would qualify, the physiological theories behind it, and how it benefits both infants and their parents. They describe a typical neonatal intensive care unit (NICU) stay and how this procedure can complement NICU treatment. | Susan Luddington-Hoe |
Living Miracles: Stories of Hope from Parents of Premature Babies |
Both mothers of former "preemies," the editors have compiled testimonies in an effort to offer emotional support to other parents who have babies born before term. These essays go passionately into the experience of parenting a premature baby. | Kimberly A. Powell, Kim Wilson, and Jeffery Thompson |
Newborn Intensive Care: What Every Parent Needs to Know |
This book provides a calm, caring but realistic guide to help families cope. This book provides information - both technical and anecdotal - and includes a thorough index and glossary for quick reference when medical personnel use technical. There is also a bibliography, helpful photos and diagrams. | Jeannette Zaichkin |
Preemie Parent's Companion: The Essential Guide for Caring for Your Premature Baby in the Hospital, and Home and the Through the First Years |
This book discusses how to be informed partners with the healthcare team in the newborn intensive care unit, coping with medical complications and their treatment, ways to hold a preemie, how to interpret a preemie's body language, follow-up visits with the doctor, and more. | Susan Madden |
Preemies: The Essential Guide for Parents of Premature Babies, Dana Wechsler and others |
The authors, parents of preemies and a neonatologist, wrote a book they wish had been available to them when they needed it. The authors cover myriad issues, ranging from a discussion of risk factors for prematurity, through possible and probable problems in the newborn's life and early years, to long-term prognoses. The book is primarily in a question-and-answer format, with lots of accompanying information. | Helen Harrison |
| The Premature Baby Book: Everything You Need to Know About Your Premature Baby from Birth to Age One | This book is a comprehensive, authoritative guide to understanding why babies are born prematurely, what the ramifications of such births are and what parents can do about it. The authors address parenting a preemie in the hospital and parenting a preemie at home | William Sears, Robert Sears, James Sears, Martha Sears |
Your Premature Baby: The First Five Years |
This book is an excellent resource for a new parent of a preemie. Its primary focus is on parenting your baby in the NICU, and it is filled with advice on how to handle your baby, ways to provide comfort and more protection and assistance in interacting with professionals in the NICU. Overall it is a comforting book which introduces you to the astonishing world of neonatal intensive care. | Sandra Lousanda |
Your Premature Baby and Child |
This book provides parents of premature children with much-needed information--and, equally important, it does so in a welcoming and accessible way. The language is straightforward, descriptions of medical and other issues are concise and to the point, and sidebars, bullets, checklists, testimony from other preemie parents, and other features make the book inviting for browsing, fact-finding, and more. | Amy Tracy and Diane Maroney RN |
Out of Sync Child: Recognizing and Coping with Sensory Processing Disorder |
This book provides information on identifying Sensory Processing Disorder, a common but frequently misdiagnosed problem in which the central nervous system misinterprets messages from the senses. It includes additional information from recent research on vision and hearing deficits, motor skill problems, nutrition and picky eaters, ADHA, autism, and other related disorders. | Carol Stock Kranowitz |
Out of Sync Child Has Fun |
This companion volume to The Out-of-Sync Child presents activities that parents of kids with Sensory Integration Dysfunction can do at home with their child to strengthen their child's abilities-and have some fun together along the way. | Carol Stock Kranowitz and T.J. Wylie |
Baby Steps (This book provides a step by step guide of activities to do with your child from holding their head up to walking. There are also pictures to assist you as well as appropriate toys for each stage of gross motor development.) |
The simple, fun, and healthy exercises in this book show parents how to do aid their child in physical, mental and emotional development, as well as strengthening the parent-child bond. It has detailed exercise instructions, developmental charts, tips on toys, and sensible advice. | Susan Fox |
Minds: Brain-Building Games Your Baby Will Love |
The authors, child development psychologists and coauthors of the acclaimed Baby Signs, have teamed up again to assist parents in teaching their infants from birth to 36 months of age. Their goal is to take state-of-the-art research and translate it into pragmatic techniques for fostering child development in the areas of problem solving, talking, reading, and math preparation. | Linda Acredolo, PhD and Susan Goodwyn PhD |
Baby Signs: How to Talk with Your Baby Before your Baby Can Talk |
This book shows you how to encourage your baby's use of nonverbal gestures to enhance communication. Simple hand movements signify objects, events, and needs, so your infant can enjoy interactions with you that otherwise would have been impossible until they could talk. | Linda Acredolo, PhD and Susan Goodwyn PhD |
Coping with a Picky Eater: A Guide for the Perplexed Parent |
Almost every child goes through a picky-eating phase at one time or another. This no-nonsense book helps remove some of the anxiety that adults experience during these phases, and provides parents and caretakers with plenty of practical advice on coping with picky eaters. | William G. Wilkoff, MD |
Special Children, Challenged Parents: The Struggles and Rewards of Raising a Child with a Disability |
A book for parents who are grappling with difficult issues related to a medical condition, behavioral problem, or learning disability. This book provides sound advice written in plain English from a psychologist whose son is autistic. | Robert Naseef |
Super Baby Food Book |
This book discusses everything you should know about feeding your baby and toddler from beginning solid foods through age three years. How and when to start your baby on solid foods, with detailed information on the best and safest high chair, spoons, bibs, and other feeding equipment. | Ruth Yaron |
Baby Play |
This book includes activities that are loosely structured, don't require purchase of special stuff and create the context for a lot of loving interaction between the baby and parent. | Doctors Wendy S. Masi and Roni Cohen Leiderman |
Toddler Play |
This book shows you different games according to your child's age with colorful picture demonstrations. It also introduces different types of games for different stimulation. | Doctors Wendy S. Masi and Roni Cohen Leiderman |
Parenting with Dignity the Early Years: Five rules for resolving the most common challenges with children two to six |
This book teaches parents how to instill a sense of responsible decision-making in their children. The author applies his five rules of parenting to help parents of children aged two to six overcome the most common and frustrating challenges associated with the toddler and pre-school years. | Mac Bledsoe |
Child Care and Respite Care
Resource |
Contact Information |
|---|---|
National Child Care Information Center |
|
Student Sitters ( Northern Virginia babysitting service) |
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ARC Respite Locator (temporary respite care for children with special needs) |
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Mclean Bible Church Breakaway Respite Care Access Ministry (respite care for children over the age of 2 with special needs)
|
8925 Leesburg Pike
|
Caring Communities (provides kits that will train adults and teens in the community to provide care for children with disabilities) |
1015 Glen Eagle Court http://www.caringcommunities.org
|
Montgomery County/Prince George’s County Maryland Maple Shade |
(410) 742-7400 |
The Arc of Montgomery County |
Affiliate of the National ARC, it provides a variety of programs for young children with special needs. The Family, Infant, and Child Care Center provides child care for medical fragile infants and children with special needs from 6 weeks to 5 years of age. Montgomery Special Achievement Center provides special education for children with delays. Inclusion is encouraged. 11600 Nebel St. , |
The Arc of the District of Columbia |
Affiliate of the National ARC |
Resources in Spanish
Resource |
Information |
|---|---|
March of Dimes (in Spanish) |
|
Informacion La Prevencion del RSV RSV Protection (in Spanish) |
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Hitos en el Desarrollo (Zero to Three Developmental Milestones) |
|
Hispanic Committee of Virginia 5827 Columbia Pike Suite 200 Falls Church VA 22041 |
www.Hispaniccommiteeofvirginia.com (703) 671-5666
|
National Council of La Raza |
(202) 785-1670 |
Washington DC Metropolitan Hospitals
Hospital |
NICU Services |
Contact Information |
|---|---|---|
Children's National Medical Center |
Level IV NICU, Not a delivering hospital, comprehensive pediatric and genetic specialists |
111 Michigan Ave., NW , Washington, DC , (202)884-5000, www.dcchildrens.com |
| George Washington University Hospital | Level IV NICU; 12 bed unit | |
Georgetown Hospital |
Level III NICU, 44 beds |
3800 Reservoir Road, NW , Washington, DC 20007 |
Holy Cross Hospital |
Level III NICU with a 46 bed unit |
1500 Forest Glen Rd. , Silver Spring, MD , (301)754-8800. |
| Howard University Hospital | Level III NICU; 9 bed unit | 2041 Georgia Ave., NW |
INOVA Alexandria Hospital |
Level III NICU |
4320 Seminary Road Alexandria, VA 22304 , (703) 504-3000, |
INOVA Fairfax Hospital |
Level IV NICU; 75 bed unit; fifth largest perinatology department and antenatal |
3300 Gallows Road Falls Church, VA 22042 , |
INOVA Fair Oaks Hospital |
Level II NICU, 17 bed unit |
3600 Joseph Siewick Drive Fairfax, VA 22033 , (703) 391-3600, |
INOVA Loudoun Hospital |
Level II NICU, 7 bed unit |
44045 Riverside Pkwy. , Leesburg, VA , |
Potomac Hospital |
Level III NICU, 6 beds in Level III and 8 beds in Level II |
2300 Opitz Blvd. , Woodbridge, VA 22191 |
Prince William Hospital |
Level III NICU,8 bed unit |
8700 Sudley Road , Manassas, VA 20110 , (703) 369-8270 |
| Providence Hospital | Level II NICU; 10 bed unit | 1150 Varnum St. , NE |
Reston Hospital Center |
Level II NICU, 12 bed unit |
1850 Town Center Parkway , Reston, VA 20190 , (703) 289-9000 |
Shady Grove Adventist Hospital |
Level III-B NICU |
9901 Medical Center Dr. Rockville, MD |
Virginia Hospital Center |
Level II NICU, 15 bed unit |
1701 N. George Mason Drive |
| Washington Hospital Center | Level III NICU; 20 bed unit | 110 Irving St., NW |
