One mom’s advice to other NICU families

Written by Heather Shields

Read Heather’s story about the birth of her twins,

I wish I could say it will be easy for the families to leave their baby in the hand’s of most amazing doctors, nurses and respiratory therapists, but the reality is it will likely be the hardest thing you will have to do in your life. I would encourage the families to:

1). Spend time with your baby. Get involved in their direct care when appropriate. Learn how to care for your baby from the NICU staff. Change their diapers. Hold them. Feed them. Touch them. Love them. Even though you may not be able to do all of the normal activities you would with a healthy baby, your baby still needs now more than ever.

2). Study your baby. Watch their behaviors. You are your child’s best advocate. No one knows your baby like you do. You are the voice for your child. You are the most important part of your child’s medical team. Notify the staff if something doesn’t seem right.

3). Take pictures. Take videos. Treasure each and every moment.

4). Celebrate their life. Celebrate each and every milestone no matter how big or small.

5). Be cautious. Be very cautious because NICU babies are fragile and vulnerable. Wash your hands like crazy. Stay away from the NICU if you are not feeling up to par.

6). Ask questions about your child’s conditions. Educate yourself. Ask the medical professionals about reliable websites where medical information can be obtained. Searching the Internet can be alarming and overwhelming.

7). Things may not go as planned. It’s okay to mourn setbacks. It’s okay to cry. It’s okay to grieve the loss of your pregnancy, your baby’s medical issues etc. You are not alone.

8). Find a support system whether it be the Winnie Palmer’s NICU Support Group, other families in the NICU, Facebook support groups, a family or friend who has NICU experience, Greater Orlando Moms of Twins and Triplets, Down Syndrome Association, Adoption Agency etc.

9). Find out what mode of communication works best for you when you can’t be at the hospital and notify the staff of your preference. Do you prefer to talk on the phone, through email or wait to talk face to face at NICU?

10). Being in the NICU can be a traumatic experience for many families. Ask for help if you need it. Seek out the NICU Social Workers or Hospital Chaplain. They are a wealth of information.

11). If your child will have a lengthy NICU stay, identify NICU staff members who can serve as your babies primary care providers. It will bring you peace and comfort knowing the same staff members are caring for your child each time they work.

12). Participate in Kangaroo care (skin-to-skin holding). Let your baby smell your skin, hear your voice, and feel the warmth of your body. Encourage your husband or significant other to participate in Kangaroo care as well.

13). Breast milk is liquid gold to the NICU babies. Pump. Pump. Pump. Stockpile milk in your freezer. Breastfeed when you can. On the flip side, don’t beat yourself up if you can’t provide breast milk for your child. Just do your best.

14). When gestational appropriate, sing songs to your baby. Read stories. Play music.

15). Take care of yourself. Love yourself. Be kind to yourself. Take time away if you need it. It’s okay to leave the hospital.

16). Never give up hope. Have faith. Believe.

17). Seek out reference and support materials the NICU has available.

18). Keep a journal, develop a blog, or create a scrapbook that you can share with your child one day. Writing down your thoughts and feelings can be very therapeutic. I remember writing in my journal one day about Kendall and Carson’s “life story.” Their nurse that particular day reminded me I was not simply writing their story, I was writing my love story to them. She was certainly right.

19). Create a way you can communicate with family and friends about your baby’s condition so that you don’t have to talk to a bunch of people if you don’t feel up to it. Some families create Facebook pages for their child. Others update their families and friends through the www.caringbridge.com website or personal blogs. One remarkable feature about Caringbridge.com is you can print a beautiful book when the time is right, filled with comments, pictures, updates etc.

20). Decide what boundaries you want to set with your family and friends in terms of coming to the hospital, holding your baby, feeding your baby and stick to it. Because our twins were micro preemies, we only let immediate family in to see them and we didn’t let anyone hold them other than my husband and I while we were in the NICU.

21). Accept help when it’s offered. Let friends or family drive you to the hospital, bring you homemade meals, help decorate your babies room if this hasn’t been done. That way you can focus on being the best you can be for your baby.

22). Don’t forget about your spouse or significant other. Going through an experience like this is difficult for them too. Lean on each other. Stand united. Be positive.