November 17th was World Prematurity Day, and many articles are popping up on social media about research and awareness for premature infants. But for the millions of families who are living the reality of premature birth, awareness is only part of the picture. Having a preemie is a life-altering experience, one which no parent is completely prepared for.
While the physical health of the baby is of utmost concern, mothers and fathers of premature infants have immediate needs as well. Often, moms have endured difficult pregnancies or deliveries which result in premature birth; they may be dealing with health concerns of their own while desperately wanting to be by their baby's side. Fathers may feel pulled in several directions, needing to simultaneously support their premature newborn, their partner, and other children.
Our hope is that the following tips from Kids in the House experts and parents can offer some solace and support to parents living through a NICU stay.
"When the baby does not stay with you after delivery, it can be very devastating," explains Lauren Hyman, MD, an OB/GYN practicing in Los Angeles. "It's not what you anticipated. It's not what you expected. And, you have to get used to the idea that the baby may be separated from you for days, weeks, even months in the case of a severely premature baby." Hyman urges parents to believe that they will bond with their baby, even if it has to be in a different way than they'd imagined. "The important thing to remember is that the baby and you will be bonding while you're visiting together. And, once the baby is back in your arms, your relationship will be just as strong as if the baby was with you from the onset." Until this reunion happens, consider doing a few key things:
- Take photos. "Have the nurses take pictures of the baby, or your partner or yourself can take pictures of the baby and you can put these pictures on your hospital bed. You can actually tape the pictures to the side of your bed so you can feel the baby's presence with you. You can also take pictures of yourself, your partner and the baby's siblings, and put the pictures up on the baby's bassinet facing in towards the baby if this is allowed by the NICU so that the baby can feel your presence with him/her," says Hyman.
- Touch, speak, and sing. "Talking to your baby or singing slowly to your baby is very important," advises Phillipe Friedlich, MD, a neonatologist at Children's Hospital of Los Angeles. "(In some NICUs) there are special programs implemented to help families and their babies cope better with the stress... there are programs with massage therapy where the parents can get involved touching their babies for therapeutic interventions that often increase the bonding between the baby and the mother or the father. There are therapies with music that have recently shown that not only the interactions and the bonding between mom and dad are certainly much improved, but also improve the health and the recovery of their babies. Your nurse can show you special techniques so that you can spend a lot of time with skin to skin contact."
- Pump, if you can. "Providing colostrum and later breast milk for you baby is wonderful for not only your baby's health, but for you, so that you can feel like you are actively participating in your baby's recovery, in your baby's growth, in helping your baby get stronger," Hyman explains. "If you are unable to breastfeed her or to pump, that's okay, too. But, if you can, it's a wonderful way to encourage bonding and to give you something active to do to participate in this process of your baby's recovery."
- Keep a journal. According to Hyman, "A journal is a way that you can record your thoughts, your feelings and what's going on with your baby. It doesn't have to be an obligation. You can write in it just whenever you feel like. But, when you do want to put something down on paper either for that moment or to look at back later, a journal is a great way to do this. Also, when things get a little bit scary or dizzy, or you feel like it's two steps forward and one step back, you can look at your journal and see how far your baby has come since it first began its stay in the NICU."
- Fix your eyes on the prize. "As hard as it is to be separated from your baby, know that it is done so that your baby can come home to you when it's absolutely safe and healthy. Accept support of your family and your friends during this difficult time; visit your baby whenever you're able to. When your baby does come home, your bonding with the baby is going to be just as strong as if your baby never left your side. My friends, my patients who've had babies, who've stayed in the NICU for days, weeks and even months are just as close to their children as the ones who brought their baby home after two days in the hospital."
Amanda Knickerbocker is a blogger and mother of a micropreemie who spent 200 days in the NICU. She wants parents to know that "whatever you're feeling at this time is completely fine and rational, whether you're ecstatic that your child is here, or terrified by all the machines and their extreme, critical health problems. However you're responding to it right now is right for you, and you need to feel as though you're doing what you need to do for your child." To keep yourself emotionally healthy, Knickerbocker recommends taking time for yourself. "It's overwhelming to be in the NICU, and it's overwhelming to hear all of the different things that the doctors are going to tell you each and every day. So make sure you're taking some time for yourself, that you are taking a shower every day and getting ready, and that you are allowing yourself to have some 'me time.'" She also suggests sticking to a schedule, and giving yourself permission to take a day off from the NICU. "Don't feel as though you need to spend every moment in the NICU. If you are able to, that's wonderful. But if you're finding that it's stressful, take a day off. Call the NICU. Tell the nurses. Allow them to take care of your child because that's their job, and that's what they're there for. And make sure that you are taking care of you."
If you're the father of a preemie, don't forget about your own emotions. When blogger Mike Spohr's daughter Madeline was born at 28 weeks and 6 days, he discovered that there was little support for preemie fathers. "People would say, 'How is your wife? She must be having a terrible time right now. I feel so bad for her.' She was having a tough time, but I was too." It's just as important for fathers to engage in self-care, and reach out for help when needed.
Lastly, it can be difficult to talk to friends and family about your NICU experience, especially when you're already feeling emotionally fragile. Says Knickerbocker, "People don't really understand what you're going through or the stress that you're feeling. Understand that they don't understand; friends and family are going to say silly and sometimes stupid things about your child, but understand also that most of them are genuine in their concern and that they're trying. But you should also be frank with friends and family. You should explain to them what is going on with your child and you should tell them what your needs are. Everybody is different -- if you want to talk about your child say, 'I would like to talk about my child.' If you want a place where you're free from worrying about what's going on with your child say, 'I just can't talk about that right now.' But being clear in your needs is the most important thing that you can do to help your friends and family best support you."
Advocating for your baby
One of the worst feelings a preemie parent can endure is helplessness. Dr. Friedlich reminds parents that they are their child's best advocate, and that it's okay to ask questions about their care and medical procedures. "The best way to advocate for your baby is to ask questions. If you cannot think of questions right away, write your questions on a piece of paper and give them to your doctor or nurse," he suggests. "The other way to advocate for your baby is to come to the NICU. At the beginning, the NICU is a scary place. There are a lot of babies, a lot of commotion, a lot of noise. But you need to be present. Your baby knows that you're there. And the best way to advocate for your baby is to come as often as you can. With time, you will learn the intricacy of the NICU, but in time also the staff will really incorporate you in the care of your baby. And the best way for you to care for your baby is to be present on a regular basis. With time, your baby will be healthier, and your incorporation of care will be more significant, such as when to feed the baby or when to hold the baby. Those are important things you can do to ensure that your baby has the best possible outcome."
It's also important to take advantage of any and all resources you're given, says Friedlich. "There are many resources that are at your disposition when your child is admitted into the NICU. Obviously your doctor and your nurse will always be at your bedside. But you must use some of the other resources. For example, a social worker is assigned to each patient in the NICU. That person has a wealth of information and may be very useful to you. Sometimes it's about completing some health insurance paperwork, or a place to stay, or how to best handle the information to your friends. Other health care providers are also very important. For example your physical therapist or occupational therapist may be quite involved in the care of your baby. And they provide you some information on how to best handle your baby or how to, for example, touch your baby at times... Use all the information and the people that are caring for your baby to gain more information. The more knowledge you have, the better informed you are, the better and easier the decisions you will have to make for your baby will be."