Life After the NICU
Inspiring Stories for Parents of Premature Babies
Advances in research and technology have helped increase the survival rates and long-term success of premature babies to levels higher than ever before. Being born too early can create challenges in life but there is always a chance to find a way to live the life you want.
Dr. Saroj Saigal, a renowned and award-winning neonatologist wrote an inspiring and informative book called “Preemie Voices“ about young people who were born at McMaster weighing less than two pounds, three ounces. Now in their thirties, these men and women provide candid and personal stories about their lives, challenges and accomplishments. Dr. Saroj Saigal explains how many extremely premature babies go on to enjoy fulfilling lives. *
Watch the video documentary of a few participants from “Preemie Voices“.*Taken from Dr. Saigal‘s website: http://www.preemievoicesbook.com/
Bringing Your Baby Home
After you leave the NICU, your challenges in caring for your baby may be big or small—depending on how premature your baby was at the time of birth.
You may find it hard to adjust to going from the 24-hour guidance and care provided by the NICU to the 24-hour guidance and care required at home. It can be overwhelming, so do not feel ashamed if you find that you need extra help, whether from family, friends, or your baby's health care providers.
Here, you can view a selection of success
stories about premature babies who have grown into truly amazing children and young adults.
Read their amazing stories »
Life after the NICU
When your baby was admitted to the NICU, you could barely imagine the day when you would take your baby home. This day may have come before your baby’s due date or may have been weeks or months after complex medical care. Going home after learning all that your baby needs can feel very overwhelming (Reiss, 2005).
Your baby may require specialized equipment or medications to go home. Oxygen or constant monitoring may be ordered by the medical team and should be arranged before your discharge. These items do not mean that you are completely home-bound, but you do need to plan how you will travel if you have a fragile or medically complex baby. Learn all you can while in hospital so that you gain confidence before going home.
Your baby may be transferred from the high risk unit to a less complex environment, and this may feel scary. However, it is intended to help you adjust to the less complex needs of your child, and learn to be their caregiver. Keep track of all that happens (journaling) to help you better become the advocate your baby needs.
Get involved in the discharge planning process, including meeting the pediatrician who will care for your baby- you want to develop a relationship in advance, by knowing where their office is, and making sure they receive the information necessary to take over medical care of your baby. Make sure you have an appointment booked for your child prior to discharge, for no more than a few days after discharge, so that this new doctor will learn about your baby and their needs prior to them requiring any urgent treatment. Your pediatrician or other members of the team will be able to help you advocate for your baby’s needs.
In some communities, you may be able to receive support to care for your baby, especially if they have specific medical needs that require additional nursing, occupational or physical therapy supports. Some of these needs may be paid for through your existing medical coverage or private insurance (if you have it) and others may not be covered. This can be costly and you and your team will need to decide which therapy and care options are necessary to optimize your baby’s outcome. Your costs may be able to be claimed on your yearly taxes, so hold on to all of the receipts.
Your baby may have received many tests while in hospital, and been given a variety of prognostic or diagnostic information. While it might be hard to imagine what you have learned is possible in your baby, some of the developmental challenges (physical and cognitive) that are a result of prematurity, may not be visible until months to years later. Make sure you attend your booked appointments after discharge, so that you can ensure your baby does the best that he or she can.
Some families may need to search hard for day care providers who can support babies and children with special needs- do your homework and make sure you have someone you can trust to meet your baby’s needs if you need to return to work. Talk to your doctor/nurse practitioner about any immunizations that are needed for your baby after discharge. Babies who were premature are at risk for becoming sick because of being born early, so speak to your provider about timing of appropriate immunizations to reduce the chance of illness.
You may not be sure if and when your baby can attend early-learning centers or play groups- each baby is different. This is another good question to speak to your doctor or nurse practitioner about as your baby will need certain stimulation but will also need some building up of immunity before they are exposed to lots of new normal bacteria from other children.
If you have other children, especially those in school, they may be more likely to share their sickness with the baby who was born prematurely. Your baby may become quite sick with a common cold compared to your other children so keeping them away from other sick children is recommended. However you do need to balance this against being home-bound, which isn’t good for either of you.
Keep a file of information that will help you to tell your baby’s story, including discharge summaries, medication sheets, therapists reviews, and your own thoughts, to help you when you see your pediatrician or other practitioner. This often makes a visit more productive. Write down your questions and answers in order to make sure you can share it with your partner or other team members.
Like when your baby was in hospital, you need to know that taking on primary responsibility for a child with special needs and challenges, can be draining and can be exciting. It is still as important now as it was after delivery, to take care of yourself, and find people to talk to who can be of help. You may feel very busy with all of the specific needs, but if you can’t care for yourself, you may become too sick to care adequately for your baby. Use resources like family and friends to help with food, laundry, cleaning and other tasks, especially when you first get home, so that you can focus on your baby and their needs. You will be able to take those responsibilities back on, over time, but this adjustment will be significant.
You will often be the most knowledgeable person about your child, and be aware of how much you know about their particulars. Learn from people and teach people about your child and everyone will be better able to help you and your family.
When considering the Internet for information, please be aware that all websites are NOT created equal. Do not take one perspective as the only one, and if you get an idea from a web site, speak to your doctor/team about it, and listen to the answers- often information may not really be applicable to your baby or family.
It will be an adventure once you go home, but, if you are equipped for the challenge, you and your baby will be able to grow together and have the best outcomes possible. Your baby depends on you to be their advocate, so take that role on the best way you can!
Using Medical Devices at Home
You might have to bring some medical devices to help your baby transition into his or her new life at home. Your care provider will teach you how to use these devices properly, and you can always contact them if you need more training.
During this time, extra attention is paid to nervous system development, including:
- Motor skills such as smiling, sitting, and walking
- Positioning and tone of muscles
- Speech and behavioral development
Some children who are born prematurely may require speech therapy or physical therapy later in life.
Building on Your Experience in the NICU
Although you might feel overwhelmed by your experience in the NICU—and perhaps frustrated that you and your child have been placed in a difficult situation right at the start of your child's life—your experience can have a positive effect on you as parents once you have gone home.
If you have worked with your health care providers during the time in the NICU, then you have already participated in a level of care for your child that new parents are only starting out on. What your time in the NICU has brought you is patience and experience. It also will help you establish the beginning of an enduring bond with your child.
Now, read about nutrition for your baby.
Feudtner, C. (2002). "Grief-love: contradictions in the lives of fathers of children with disabilities." Archives of Pediatrics & Adolescent Medicine 156(7): 643.
Reiss, J. (2005). "Long-term outcomes for extremely low-birth-weight infants.[comment]." JAMA 294(17): 2168-9; author reply 2169.