How do you help a friend who unexpectedly finds themselves in a world most will never know? A place that houses hundreds of newborns every year arriving just hours after birth, spending days, weeks, and months inside. Sometimes they never make it out. The fortunate ones that do may have lifelong problems, frequent visits back and forth to doctors, or a shortened childhood. The double fortunate ones are cured and lead healthy lives. Then there are the children who have been leading normal lives and suddenly their world is turned upside-down by a shocking diagnosis.
The assortment of children and their diseases are endless in a NICU.
A couple of years ago, my life was turned upside-down when my newborn son was admitted to Children€™s Memorial Hospital in Chicago with multiple heart defects. We spent nine weeks in the NICU, undergoing three open heart surgeries and dealing with several life threatening issues. It was a frightening place with dying kids, hopeless situations, questions that had no answers, days that had no routines, a constant influx of new people, new rooms, new neighbors, and new doctors. Curveballs were thrown left and right. I€™d fight them off once in a while but often they would knock me to the ground
again. It was chaos and even the most polished social skills could not prepare me for dealing with this world. I felt I had jumped onto a speeding train and all I could really do that came naturally was to keep breathing.
But in the end so much good came out of that dark place. A live baby, new friendships, opportunities to share my faith and God€™s goodness! I also experienced invaluable help from family, friends, and strangers who reached out to us and I will never forget their selfless servant hearts.
Pray in solitude at home. Pray with your family. Pray with your small group. Place the patient and family on a prayer list at your church and other churches. Leave a prayer voicemail for your friend. Send them an email prayer. Quote Scripture. Let them know you and others are praying. If you get them live, pray with them and do all the praying. They are exhausted.
Be a sounding board. Don’t talk about yourself, your problems. If you have gone through something similar it’s ok to share but be brief and positive. Don’t tell them you understand or you know how they feel because you don’t. Instead you can say that this must be very hard, how can you help and give a few concrete examples of help so they don’t have to think.
Set up a meal plan for the family. Make an Evite invitation or email meal chain like mealbaby.com. Make it easy. Place cooler on deck where people can place food. Bring food to the hospital cafeteria if food is not allowed in hospital room.
Provide child care at hospital (so children are close to parents), in own home or family€™s home.
Carpooling for children or adults. Take children to birthday parties, paly dates, and events to keep normalcy for children.
Offer home management help like snow shoveling, mowing lawn, raking leaves, oil change, house cleaning, dry cleaning etc.
Be a mediator between patient€™s family and their extended family and Friends to ease the burden of communication and updates on patient. Use caringbridge.org or carepages.com, phone calls, or email.
Send cards, flowers, gift cards, stuffed animals, books, toys etc. to family€™s home to brighten up their day (flowers not allowed in ICU).
Please be mindful of hospital environments, don’t just show up at the hospital or ask to visit unless offered. There are lots of germs floating around. It is a very difficult environment where babies, children, and adults die. The days are filled with lots of stimulation to begin with so extra people may just add to burden. ICU does not allow visitors unless special circumstances.
Veronica Janus is the author of Abundantly More, a medical and spiritual journey offering hope and healing. It also gives practical knowledge on how to navigate life in a pediatric ICU. The author lives in Chicago with her husband and three children. To find out more, please visit www.veronicajanus.com
Andrea says
This is an excellent post – and not just for people navigating a NICU, but for people navigating any type of illness, injury, death or emotional trauma. Anything tragic that causes someone we know and/or love to become fully immersed in that tragedy would benefit from these suggestions! Great post, thank you so much.
Gin says
What an excellent post! And not just for this specific situation, but for any family dealing with an emergency (such as ours when my father had cancer). This information is perfect for those who want to help, but aren’t sure what to do. Blessings, Gin
Lori Poppinga says
Wonderful advice. Also we have found a great meal planning website @ http://www.takethemameal.com that allows a signup and organization of meal planning accessible by all involved. It has made organizing meals a breeze.
Keep up the God work.
Veronica Janus says
Thank you so much! And yes, my book and this post is not just for NICU families but hopefully helps anyone dealing with a tragic loss. Thanks so much again!
Blessings,
Veronica
Brandi says
My son was born by emergency c-section in June ’08. I was at 30 weeks but he was only 1lb 12.9 oz. We had a lot of wonderful people make us meals, but it would of been nice if they had taken time to bring them to my home instead of trying to meet me at the hospital. Also maybe think about offering to make a packed lunch. Home management help would have been great I was at the hospital almost all day everyday for 8 weeks, so household chores went on the back burner. The NICU my son was in only allowed 4 people on a list to go back and visit for the whole 8 weeks. Also, if you live close to the hospital, offer your couch for them to take a nap on in between visiting hours. I lived too far from the hospital to go home for those short breaks, but the chairs in the waiting room weren’t exactly comfortable to sit on.
Robin Bermel says
Great ideas and reminders. I have a neighbor whose family member is struck w/ cancer. I will take these points to heart and I respond. God bless you, Veronica!
Kelly Ballard says
Great advice for any unexoected medical emergency. We were blessed with lots of friends and family who helped us (and continue to help) through our daughter’s cancer treatment and rehabilitation with many of these ideas. It was a blessing!
Teresa Schilling says
We have had two NICU babies. Each have had many challenges and we have been so blessed that they are now happy healthy children. At the time it was so overwelming. The rules, the schedules, the constant changes, and the fact we lived 1 hour and 20 minutes away made it so hard. We had great friends that helped watch our other children and others that made meals to bring to feed the family while I was away. When our first NICU baby was born we could bring our other children to visit. When the second was born we could only have 4 people on the list to admit to see him (no one under 18). That was my husband, myself, my mother-in-law, and father-in-law. They did also let our pastor in to pray over him as a special consideration for religious reasons.
That meant our other children did not get to see the baby for the first two weeks of his life. When we were finally able to hold him my husband did hold him up as high as he could and had the children look through the glass doors to catch a peek. We also took pictures to show family and friends. Most just did not understand the hospitals strict rules, but his lungs were so weak any small infection could have been fatal.
The thing we asked when people they offered assistance was prayer. We had thousands of people praying for us, not just the baby. It affects the whole family. Another great blessing was gift cards to fast food places. When on the way to or from the hospital it was great to not have to worry about meals or reheating something. I also had a dear friend that made a snack bag. Waters, chips, crackers, and such so at the hospital we would have something if we got hungry.
And when it was finally time to take our youngest home, my husband simply could not take any more time off work, I had a friend take me to bring the baby home, since I was still unable to drive (complications from pregnancy and stress).
I guess my best advise is to just be available to listen. There were days I just needed a shoulder to cry on and a friend who I could turn to.
Jennifer says
Great post! With our NICU baby, we lived 3 hours from the hospital. I lived there, literally. I was blessed that my daughter had a private room with a chair that reclined and I was there 24/7, except for going to the cafeteria to eat. My husband was home with the other 8 children. Visitors (other than family) would have been totally stressful for me. I just didn’t have the mental energy to “entertain” anyone or feel like I had to. What would have been great were meals from my family at home. We got one or two maybe in the 3 weeks I was there. Also, if you know someone in the NICU don’t press the family for what you can do for them. I had a friend call at one point and tell me “you better figure out something people can do besides pray, they WANT to do something.” So stressful…
Again, great post!
Jennifer says
oops… “meals *for* my family…”