Don't
Become A Martyr
Live one day
at a time. Even though studies show that
babies respond to love, touch, and their mother's voices, it does not mean that
you have to be at your child's bedside 24 hours a day. Take breaks, and take care of yourself so you
can take better care of your baby. Tape
record your voice for nurses to play for your child while you leave to eat,
sleep, or rest. No one expects you to
become a saint, and you shouldn't expect that of yourself either. If you are tired, your baby will sense it, so
take shifts with other people to stay at the bedside. When you are tired, you can't make clear
decisions about your baby's health care.
After all, what is a martyr? A
martyr is someone who dies or gives up something irreplaceable like their
health or sanity- and your baby needs you to be 100%.
Keeping
A Diary
It
is a good
idea to keep a diary to help cope with your emotions. Recording
your feelings and your baby's
progress can become an important part of your family history. Any
dime store notebook will do. If your child makes it, it will be
an
invaluable tool to help educate your child about his/her traumatic
entrance
into the world and how special he/she is.
If you lose your child, it will be a keepsake that, unlike memories,
will not fade with time. Make sure to
include pictures, of good and bad times, and have both parents and
other family
members and friends write entries also.
Dealing
With The Physical Changes in Your Child
It can be
hard to accept the physical changes that your child will go through. After surgery swelling is exceptionally hard
for some parents to deal with, but the swelling does go away without any
stretch marks and your child will return to his/her normal size. The bandages will someday disappear, along
with the IVs and other tubes. Of course
there will be some scarring, but someday hopefully your child will proudly
display his/her "badges of courage", and you will be blessed that
they are able.
Learning How To Deal With
The Hospital Staff
Dealing
with your child's illness is hard. Many of us feel uneducated and
intimidated
around medical professionals. We should
not and need not feel this way. Speak
up! Ask questions. You have a right to know everything
about your
child's care. You have a right to choose
your child's doctors and to see your child's medical records.
Remember, staff members are also people. Treat them with the same
respect you expect
to be given. Parents who remain calm,
and do not lose their tempers during stressful times earn more respect
from the
staff than demanding, overly aggressive parents. Of course we all
want our children to receive
the best medical care possible. Educate
yourself on your child's diagnosis and medical terminology. It
will better your child's care and your
relationship with his/her care-givers.
Dealing With Family Members
and Friends
You
will
find that many of your family members and friends will be uncomfortable
with
your situation. This does not mean that
they do not care. Some may distance
themselves while others may practically smother you. Some may
cry, some may make jokes. Some with healthy children may feel
guilty. While you may not understand
these feelings, they are all natural and normal. Talk about your
feelings and keep your family
and friends informed. The easiest way to
do this is to appoint one person as a "go between" for all other
family members and friends. This way you
only have to update one person, and will spend less valuable time
explaining
and updating.
More Advice:
Designate A Cherub Liason
- Assign one family member or friend to be the go-between you and
everyone else. It greatly reduces the stress on you to "keep everyone
updated"
Questions To Ask Your Doctor - A list of helpful questions to ask your cherub's care providers
What To Pack For The Hospital - Must have's for the hospital!
Preparing For Your Cherub - Planning a baby shower, how to get help, and more
I Wish Someone Would Have Told Me - More advice from CDH moms and dads for preparing to take baby home
Advice for Family & Friends - List created by CDH families to help their family and friends to understand
