Participate in your baby's care as much as possible.

Participate in your baby's care as much as possible.

Having a premature baby can be a very lonely and frightening experience. In our communities there may be very few people who understand the specific problems facing parents of very early babies. Sometimes our babies are transferred to hospitals far from home and this can make us feel even more alienated and lost.

Most premature babies stay in hospital until around the time of their due date, and some for many months after that. The daily routine of travelling, trying to live in the world outside the hospital, maintaining a milk supply and coping with the sometimes all-consuming fear and heartache can be profoundly draining.

This advice sheet has been written by parents of premature babies in the hope that we can bring comfort to new parents.

The early days

The NICU environment is strange and stressful - the bright lights and complex life support machinery, the new language we need to learn to keep pace with our baby's care. For many parents it is like being dropped into a war zone where simply surviving will require every internal resource and every available support just to get through.

Feelings of guilt, grief, terror, anger and impotence are almost universal for premmie parents. So too are feelings of detachment. Very little in our lives prepares us for the helplessness we feel as we watch our medically fragile newborns being cared for by the experts.

Often friends and family don't know how to react, whether to congratulate you on the baby's birth or to look mournful. Even if your baby's health is precarious, it helps to name your baby and announce the birth.

If you want to breastfeed, you'll need to start expressing by the day after the birth. For many of us, this is the last thing we feel like doing but it is a uniquely precious gift to our babies and is something only we can do.

Parents often feel too stressed to be explaining the baby's condition to all the people who are concerned. Some parents find it helpful to leave a daily update on their voicemail rather than speaking to a number of people separately. You could also ask a family member or friend to be a contact person on your behalf.

Some suggestions for helping your baby

Participate in your baby's care as much as possible. Although your baby may look extremely fragile, you can learn to bath and change her, to care for her skin if it is dry. You can learn how your baby likes to be touched. Through this process, you will come to recognise your baby's facial expressions and signals and become more confident about caring for your premmie.

Learn about developmental care and do what you can to protect your baby from light and noise. There is a pattern for an isolette (humidicrib) cover in one of the resource sites listed below. If your hospital doesn't provide postural support for the babies, ask if you can bring in your own.

Ask that your baby be given pain relief or sedation for medical procedures like intubation/extubation and eye exams. Put a courteous sign on your baby's isolette requesting that staff speak gently to your baby before touching him or beginning any medical procedure.

Begin kangaroo (skin-to-skin) care as soon as your baby is stable. Parents and babies alike find kangaroo care very comforting, and for many of us it is the beginning of feeling that we really are parents, after all.

Questions to ask your neonatologist
written by neonatologist and Preemie-L member Dr Doug Derleth

1. What are my baby's chances for survival, various degrees of handicap, and long-term health problems now?
2. What medical problems are affecting my baby now?
3. How can I get more information about my baby's problems?
4. How are those problems being treated?
5. What side effects could those treatments have?
6. Are there reasonable alternative treatments we could consider?
7. How can I get more involved in my baby's care?
8. What can I do to best nurture my baby?
9. How do I find emotional or spiritual support?
10. Can the newborn ICU's social worker help me with transportation, local housing, financial aid, or other practical problems while my baby is in the newborn ICU?

This article has been provided courtesy of the Preemie-L website