Help for parents

When you have a seriously ill child or your child dies, it is difficult to know what to do, how to act, etc. The bottom line is to do what feels right to you and act however your emotions dictate. The following are just a few suggestions that might make this journey a little bit less bumpy for you and your immediate family.

While your child is in the NICU:

Take care of yourself. Having a baby in the NICU is exhausting. Eat and sleep well.

Spend as much time as possible with your baby.

Spend time with other children. Take the time to do things one on one and as a family. Try to keep family rituals intact as much as possible. Stability and predictability are good for children.

Cry. It's ok. It's ok if you cry in public.

Every emotion is valid. Express them. Keeping them bottled up can be unhealthy.

Talk frankly and openly with the medical staff. They care about you as well as your baby.

Ask questions about any and everything.

It is within your rights to request specific individuals to care for your child.

Be an unwavering advocate for your child in all matters.

Discuss issues with your spouse/partner/significant other and come to agreed upon decisions.

Educate yourself on your baby's conditions and treatments.

Accept help from others. They care about you and your child. They would not offer help if not sincere.

Let people know *exactly* what you need. They cannot read your mind.

It is ok to be selfish and/or self-involved at this time. This is a major event and your life revolves around it.

Leave your telephone numbers at your baby's bedside and request that you be called anytim something changes, day or night.

Obtain the telephone number to the NICU or your baby's room and keep it with you at all times. You are welcome to call and check on your child whenever you wish.

Touch your baby a lot if it does not agitate them.

Try not to be too upset if you cannot touch or hold your child. There are valid reasons for this although it is still difficult.

Bring stuffed animals, pictures, etc. to your baby.

Get flavored lip balm for your baby (if allowed). They like different tastes!

Ask to help with routine procedures such as taking the temperature, bathing, etc.

Do not be shocked at all of the tubes and wires attached to your baby. The look scary but each serves a purpose and babies are TOUGH. In time, these will just become part of the background to you.

For bereaved parents:

You are in control of when treatment is stopped (in most cases). Do not let anyone rush you.

Spend as much time with your baby after death as you want to.

Hold, rock, bathe and dress your baby.

Take a lot of photographs. You may not want to view them immediately but will be grateful for them later.

Obtain copies of your child's medical records, birth and death certificates. They are very informative and good to have. Each state sets a fee for these but they may be free if your child dies.

Cut a lock of your babies hair.

Make casts, molds, prints or impressions of your baby's hands and feet.