When your baby is premature
Advice for new parents
from Preemie-L parents
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 preemie 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 preemie.
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
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.
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?
A few practical suggestions
Clarify how you access the neonatologist and how regularly you will be meeting.
Find out if your NICU provides resources for parents such as books,
videos or articles for loan that you can take home.
If you have other children, find out if any inhouse supports exist,
such as creche or toys.
Decorate your baby's cot with things that are significant to you.
Take regular photos (without flashlight!) using a constant toy
beside your baby so you can measure his progress.
As your baby grows stronger, take hand and footprints to chart
growth and to celebrate every step towards her coming home.
Sometimes you'll need to take a break from the hospital routine.
Resting when you need to will assist your milk supply and help you
"last the distance" when your baby has a long NICU stay.
Some voices from our parents
"I felt somehow like she got "kicked out" of my body and I still
feel ripped off about losing the last ten weeks of my pregnancy.
Having to go home without her was the worst day of my life. When
I first got her home, I used to hold her and cry and cry because I
felt like a bad mother for not carrying her to term."
"It was difficult for me to believe that it was O.K. for me to take
a day off to get much needed rest. A NICU nurse told me, "If you
don't get some rest, you can get sick and then you can't come to
see your baby." Wow, so much for the 8-12 hour days when you're
riding on postpartum guilt for your early bird."
"What my husband and I ended up doing was creating a tape of us
reading stories and singing for the nurses to play to [our son]
during those days when I wasn't able to travel to the NICU."
"One thing that I did, because I am very sensitive to smells, was
buy some red bandanas and wash them and sleep with them next to
my skin for a night or two. I would take them to the NICU and
cover [my son's] eyes with it. I also left a note asking that the
bandana be removed every time anyone else had anything to do with him.
Whenever the bandana was replaced, [he] would calm down no matter what
"I found my babies did better when I read to them. It helped
me feel like I was doing something motherly during those times when I
couldn't hold them. After I was able to hold them, I still read to them
while I held them. [My son] used to love to place his ear on my chest and
listen to my voice rumble. All three liked books with an obvious rhythm,
like Shel Silverstein and Graeme Base."
"I know a source that gave me great relief and helped me "keep it
together" was seeing photos of the babies who had graduated the NICU ...
I would scan the board for all babies close to 29 weeks and gain such
relief looking at the "before" and "after" pictures."
"I don't know how common it is but I got postpartum depression
only AFTER I got [my baby] home. I thought when I didn't get
depressed during the NICU period that it wasn't going to happen."
"When [our son] came home, after 119 days in the NICU, we had local
children come to visit via the living room window. They were eager to
see their celebrity baby (he had been on TV and twice in the papers)
so they all came to the front verandah, stared at him through the glass
and had drinks and nibbles afterwards. Sounds daft but it met all our needs!"
Newborn Intensive Care: what every parent needs to know by Jeanette
Zaichkin, NICU Ink, Petaluma (Ca.), 1996. A detailed and friendly book
that covers most medical and other issues parents are likely to experience
in the first year.
Baby talk: for parents who are getting to know their Special Care
babies by Dale Hatcher and Kathleen Lehman, Centering Corporation,
Omaha (NE), 1989. This book can help you understand your preemie's
facial expressions and signals, so that your interaction can be as
strong as possible.
Recommended Web Sites
When you have a premature baby, you may well feel like a stranger
in a strange land. If you'd like to talk to other parents who have
been there, Preemie-L is
available as an email list and a web based bulletin board.
So you know someone who's had a premature baby? Advice from Preemie-L members for friends and
family of anyone who has had a premature baby.
Susan Warren's web page
Miracle Sam: Very Important Preemie includes guidance on
learning to handle your baby without overstimulation, advice on lactation,
caring for a central line, and instructions to make a fitted cover
for an isolette (humidicrib) which can later be converted to a cot quilt.
Emotional Responses of Parents
by Jane E. Brazy, Ph.D. is part of a invaluable web site
For parents of preemies: answers to commonly asked questions
Michael T. Hynan, Ph.D, author of The psychologial pain of premature
parents: a guide to coping, Lanham (Mass.) University Press of America, 1987
home page that includes the text
of talks given on parent perspectives and a list of academic references.
Fathers often find his writing especially relevant to their experience.
After the NICU: advice for when you finally bring your baby home
provides practical advice and insight into the experiences of other parents after their premature babies have been discharged to home.
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