When Erin Robinson Himes and her husband, Dave, first dressed their twin girls in tiny T-shirts, it was cause for great celebration. The new clothes signified that Emma and Ella, born 2 pounds 7 ounces and 3 pounds 3 ounces, respectively, had advanced enough to make their first fashion statements -- something the now 2-year-old sisters will likely be doing for many years to come. At the time, though, future sweater sets, school uniforms and prom dresses were pushed aside for more pressing matters: a seven-week stay in the NICU.
The NICU, which stands for neonatal intensive care unit, is a unit in a hospital for newborns needing special care, often because they arrive too early. In 2006 alone, 12.8 percent of the babies born were born premature. That's about 1 out of every 8 babies, and many of them need care in the NICU [source: National Center for Health Statistics, final natality data].
Each baby in the NICU represents parents who are faced with the fact that their dreams may not be turning out as planned. However, even though the NICU comes with challenges, there are ways to cope. Here are 10 of them.
When Erin, our mother from the introduction, was first ushered into her NICU experience, it was overwhelming. She didn't know she wouldn't hold her twins before they went to the NICU, and she needed medical care herself. Furthermore, the NICU is a hectic place.
That said, you can ease into the experience by familiarizing yourself with the setting. In fact, prior to labor, if you think the NICU is in your future, consider requesting a tour.
Although all NICUs vary, in general, they include a large space with babies resting in beds along the walls. Those beds include warmers; isolettes, which are incubators; omnibeds, which are combination warmers and isolettes; and bassinettes. You'll also see a lot of equipment hooked up to or around your baby, such as monitors, ventilators and electrodes. That can be upsetting, but remember that it's for your baby's care.
Elsewhere in the NICU, there are usually spaces for lactation and consultations, as well as a family lounge. Some NICUs may have more carved-out spaces for each baby for increased privacy and intimacy.
"Having a baby in the NICU is a crisis, but it is also a time of celebration as you welcome a new baby. People don't know how to feel." This comes from Lori Gunther, manager of NICU Family Support Site Development at the March of Dimes and an expert in crisis intervention and family-centered care in the NICU setting.
Recognizing the different emotions you may have can help. Gunther has a son who spent time in the NICU. One of her first emotions was guilt. A friend, who is an OB/GYN, immediately told her, "Whatever else you remember, you did not cause this." With that, she was able to set the guilt aside. This is a key message she has for others.
Take another example, Shellie Seidman Golivesky, whose now 2-year-old son Devin was hustled to the NICU. She says, "My emotions were out of whack, and I was an emotional mess. There was this tiny little boy, and I felt completely helpless!"
Guilt (although unfounded) and helplessness are expected. You may go through a wide range of emotions, such as panic, anxiety, fear, denial, apathy and loneliness.
Having a voice is empowering in most environments, and that holds true for the NICU. In fact, when parents are able to voice their concerns and thoughts, it helps them process the situation. After all, you share the same goal as your NICU care team -- helping your baby. Therefore, a collaborative relationship can be a powerful tool. Express your interest in being a part of your child's care.
Becoming a part of the team also involves learning who its members are and how they work. Find out who's on your care team, from doctors and nurses to social workers and people offering spiritual services. What are their schedules? At what times do shifts change? When does rounding, when the care team gets together to discuss a case, occur?
In addition to finding out about your care team, it's helpful to learn the ins and outs of the hospital, something with which your social worker should be able to help.
Things to research:
- where you can purchase food and eat
- how to access cots and chairs
- the availability of temporary housing
- the locations of phones and computers
- the availability of support groups
- hospital policies.
If there's ever a time for research in your life, this is it. Arming yourself with information helps keep you in the know on your baby's condition and the things happening around you. Learn as much as you can about your child's diagnosis and care -- keeping in mind that there will still be unknowns as you move forward. Some example questions include:
- How is my baby doing?
- Have there been any changes in my baby's status?
- Who is in charge and who can I contact with questions?
- How will I be updated if there are any changes?
- What types of equipment and tests will be used in my baby's care?
- What can I do to help?
However, gathering information can be a daunting task in the NICU. There are lots of things to learn, you may be overwhelmed, and the subject matter can be complicated. Consider writing down all of your questions and the answers, and, if possible, have a family member or friend with you. Together, you might remember more than you would on your own.
Your baby may be in the NICU, but that doesn't change his or her lineage. Your baby is still your baby, and, although the capacity to interact may vary, it's still possible.
Need some guidance? Consider asking your care team for instructions. And, keep asking every day if you can hold your baby -- it's one of the most helpful things you can do for you and your infant, but you may not have even thought it was a possibility.
Other interaction tips include talking, reading and singing to your baby. Record your voice for use while you aren't there. Hold your baby's foot or hand. Feed your baby if possible, pumping to prepare if your baby isn't quite there yet. Decorate the incubator with cards and pictures. Remember Erin? She brought her twins' bedding from home to use during their hospital stay.
When your baby is ready, try holding and rocking him or her. Then, as his or her health improves, you may hear your care team refer to kangaroo care, which is holding your baby on your chest, skin to skin. This approach helps with bonding and can be very calming for the baby.
Finding an emotional release through a confidant can help with your NICU journey. Seek out your partner, a relative or friend with whom to share your thoughts. Remember your immediate access to the social workers and spiritual services at your hospital. They're there to walk with you during this difficult time. In addition, your hospital may have support groups you can tap into.
Ask if your hospital is a March of Dimes NICU Family Support site, which spans all 50 states, Washington, D.C., and Puerto Rico. Through this program, the March of Dimes connects NICU families with the information and comfort they need. The organization works with hospitals to enhance delivery of care that is focused on the newborn and entire family and provide staff development. You can also locate local chapters through the March of Dimes Web site.
Check out some online venues, too. For example, connect with ShareYourStory.org, the March of Dimes' online community developed specifically to help families in similar experiences connect with each other. Thanks to a team of health education and technical professionals and volunteers, this site is not only a comforting online community for members, but also a safe venue.
Remember how spilling the beans to your childhood diary helped soothe your first wounded heart? The power of journaling somehow becomes magnified as an adult and serves as a very authentic tool when coping with the NICU experience. In fact, putting pen to paper and journaling about your NICU experiences not only helps you share your emotions and thoughts, but also can help you track your baby's progress. Then, in years to come, you'll have something that you can look back on and reflect.
As you journal, include pictures and details. Consider a special NICU journal that helps you mark milestones unique to the NICU experience, such as when you hold your baby for the first time, the first bathing, when nursing becomes possible or the removal of certain treatment devices.
With those significant milestones, be sure to celebrate. Gaining weight in the NICU or saying "farewell" to a set of tubes can become moments of joy and pride deserving of some cheer and a little relief.
Just as your baby is different from every other baby in the NICU, you are also different -- meaning you're different from your friends, parents and partner. The way that you manage life events might be nothing like the way other people in your life handle them. You and your partner may process the NICU experience differently, and it's important to remember that that's OK.
For you and your partner to help support each other, keep in mind that you may have the same emotions, but at different points in the NICU experience. Or, you may have completely different reactions the entire time. By respecting each other and making decisions together, you can become each other's support system. Spend time with your baby together and trust each other's instincts [source: March of Dimes].
For our mother of twins, Erin, there was a major obstacle for getting to and from the hospital post-pregnancy: She couldn't drive for three weeks. Those driving restrictions are common to new mothers. In the case of having an NICU to travel to, this challenge can be monumental. Erin is quick to say that having friends and family to drive her to visit her girls during those three weeks when her husband needed to return to work greatly relieved her stress.
However, you might be the type of person who hesitates to ask for or accept help. This is the time to put that characteristic aside, as you really need assistance -- especially so you can not only be with your baby, but also find time to rest and heal yourself.
The people in your support system may need some suggestions on how they can help. Offer them with some examples that will be most helpful to you, such as providing those rides to the hospital, helping with your other children and assisting with those daily chores that you can't focus on at the moment.
Did you visualize what it would be like to learn you were pregnant and then to have the baby? Chances are, you stocked up on supplies during your pregnancy. Just as you prepared then, you can use preparation to help you now. In fact, Gunther, the March of Dimes manager of NICU Family Support Site Development mentioned earlier, describes this coping mechanism as "predict and prepare."
When you predict and prepare, you think through what may happen and ready yourself for it. For example, if you think your baby may need surgery, try to predict how you may react and what you'll need. Let people know and ask for assistance with daily chores so you can focus on your baby.
Or, Gunther gives another example of when she helped a mom think about what she would want at home when finally, after seven months, she was getting ready to take her baby home. She asked several questions -- Will you want people there? What would you like to eat? This is a moment of celebration; will your partner be there? Thinking ahead ensures you will have what you need and understand how you might react, whether it's a positive or negative event.
Premature delivery can be a scary thing. Read one mother's story of premature delivery to learn about the process and emotions of delivering a preemie.
More Great Links
- Baby Zone. 'NICU Newborns." (June 6, 2010)http://www.babyzone.com/baby/newborns/article/nicu-newborns
- Bontrager, Katherine. "Delivery Room & ICU." Pregnancy Today. (June 6, 2010)http://www.pregnancytoday.com/articles/delivery-room-nicu/a-tour-of-the-nicu-5009/
- Dyer, Kirsti A., M.D., M.S. F.T. "For Those Who Hold the Littlest Hands. Information & Support for Parents of Babies in the NICU." 2007. (June 6, 2010)http://www.nicuparentsupport.org/
- Gunther, Lori, M.S., Manager, NICU Family Support Site Development, March of Dimes. Personal Correspondence. June 17, 2010.
- Gunther, Lori, M.S., Manager, NICU Family Support Site Development, March of Dimes. Personal Interview. June 10, 2010.
- KidsHealth. "Common Diagnoses in the NICU." June 2008. (June 6, 2010).http://kidshealth.org/parent/system/ill/nicu_diagnoses.html
- KidsHealth. "When Your Baby's in the NICU." June 2008. (June 6, 2010)http://kidshealth.org/parent/system/ill/nicu_caring.html
- March of Dimes. "Coping With the NICU Experience: A Father's Role." September 2007. (June 7, 2010)http://www.marchofdimes.com/prematurity/21292_11225.asp
- March of Dimes. "Family & Friends: Grandparents and the NICU: Your Special Role; excerpt from Parent: You & Your Baby in the NICU." March of Dimes. September 2007. (June 7, 2010)http://www.marchofdimes.com/prematurity/21289_11210.asp
- March of Dimes. "Family & Friends: Supporting Your Other Children." September 2007. (June 7, 2010)http://www.marchofdimes.com/prematurity/21289_11209.asp
- March of Dimes. "For Families: The NICU Family Support Program." December 2007. (June 17, 2010).http://www.marchofdimes.com/prematurity/index_families_5769.asp
- March of Dimes. "For Families: What We Know and What We Don't." April 2010. (June, 7, 2010)http://www.marchofdimes.com/prematurity/index_families_5578.asp
- March of Dimes. "For Families: Why Do Women Delivery Early?" July 2009. (June 7, 2010)http://www.marchofdimes.com/prematurity/index_families_5582.asp
- March of Dimes. "The NICU Roller Coaster; excerpt from Parent: You & Your Baby in the NICU." March of Dimes. August 2009. (June 6, 2010)http://www.marchofdimes.com/prematurity/11191.asp
- March of Dimes. "Parenting in the NICU: Becoming an Informed Parent; excerpt from Parent: You & Your Baby in the NICU." March of Dimes. August 2009. (June 7, 2010)http://www.marchofdimes.com/prematurity/index_nicu_6084.asp
- March of Dimes. "Professionals & Researchers." (June 17, 2010) http://www.marchofdimes.com/2222_11419.asp
- Mayo Clinic. "Coping and support." November 25, 2009. (June 6, 2010)http://www.mayoclinic.com/health/premature-birth/DS00137/DSECTION=coping-and-support
- Nathan, M.D. "What Parents Needs to Know about the NICU." Baby Zone. (June 7, 2010)http://www.babyzone.com/baby/newborns/article/nicu-need-to-know
- National Center for Health Statistics, final natality data. "Preterm Birth Overview." (June 17, 2010)http://www.marchofdimes.com/peristats/tlanding.aspx?reg=99&top=3&lev=0&slev=1
- Robinson Himes, Erin. Personal Interview. June 9, 2010.
- Seidman Golivesky, Shellie. Personal correspondence. June 7-9, 2010.
- ShareYourStory.org. (June 15, 2010)