Born with numerous birth defects, my second child called the Neonatal Intensive Care Unit NICU home for seven months. I learned a lot during that time about how to (and how not to) handle the challenges of living life in the NICU. Having a baby with medical problems can be stressful, heart-wrenching, and, at times, flat out terrifying, but there are some key steps you can take to make your time in the NICU more bearable for you and easier on your baby.
• Focus on what you have, not what you’re missing. One of the hardest things when you have a baby born with health issues is letting go of your idea of what a birth story should be like or the things a newborn should do or experience. There is an essay, written by Emily Perl Kingsley (special needs mom & a writer for Sesame Street), called “Welcome to Holland” that I found to be the perfect reminder to me to cherish each precious moment I have with my son rather than wasting time and tears worrying about what could have been. I highly encourage you to read it, but the basic point is, realize each second you spend with your child, you are witnessing a miracle. Do not miss out on the miracles you have because they do not fit the cookie cutter picture of an ordinary life.
• Find out what you CAN do for your baby. If your child cannot be rocked yet, ask if you can hold him/her up while the nurse changes their bedding. If your child cannot get a full bath, see if a nurse can show you how to wash their hair. Learn how to clean around their tubes or help change their leads. Ask the nurse to show you how to feed them or work their feeding pump. If your child is a long-term NICU resident like my son was, ask for a consult with an occupational therapist and learn some little exercises you can work on with him or her (doctors do not prioritize this because they are focused on medical care, but more often than not there is some little thing you can go ahead and be doing to encourage your child’s mental, if not physical, development). Ask if you can bring blankets, socks, or mitts from home. If your child is older, they may can have toys, a bouncer or swing, or a mobile. Anything you can do for your child will help you bond and make your experience little less difficult.
• Don’t be afraid to ask questions. Ultimately, the buck stops with you. Doctors may disagree with one another on the best course of treatment, NICU nurses, as wonderful as most of them are, are not going to know everything about your child’s case, and, like it or not, they are all human and sometimes they will make mistakes. You need to be fully involved, both for your own peace of mind and to ensure your child is getting the best care possible. So, find out everything there is to know. Learn why your child needs that medicine, what that wire is for, what that long medical term means, what doctors are coming by to see your child and what they have to say about his/her condition (it helps to ask each nurse to take notes for you when you’re not there) and everything else you can think of. This does not mean everything falls on your shoulders, it just means you are the parent and you are going to know your child, and your child’s needs, better than anyone.
• Realize no matter how much you know, there are things beyond your control. This is true for you, for your child’s doctors, for the NICU nurses, everyone. Sometimes things cannot be predicted, prevented, controlled, or changed. In those moments, just realize you are doing the very best you can and keep pressing on. It’s still ok to question things, to find out if things can be done differently to prevent future problems, or what the next step is, but try to do so with the goal of improving things for your child, not out of an emotional reaction at yourself or anyone else. Remember, it is always ok to cry and to vent (nurses tend to be GREAT listeners), but remember to vent to someone, not at them.
• Know that your child’s medical team really does care and is on your side. The worst/most embarrassing mistakes I ever made always involved me getting angry at someone caring for my son. Like I said before, people make mistakes, but reacting out of emotion to those mistakes does not help improve things for your child, it simply puts you at odds with the people who really are trying to help him/her. If something does not seem right, ask your nurse or your doctor about it; a lot of them are going to view your child as one of their own and would never knowingly do something that was not in your baby’s best interest. If a major mistake is made or you are seeing repeated errors made by a particular nurse or doctor, it is ok to seek out the charge nurse, your child’s neonatologist, or the hospital social worker and tell them you have some concerns. That’s what they are there for – to ensure you have a voice and your child receives the very best care possible. Sometimes there may something behind an action that you are not aware of and a simple explanation will clear things up, sometimes there may be a hospital policy that needs to be addressed, sometimes the doctors may not all be on the same page, sometimes a nurse may need to re-learn a procedure, or, in extreme cases, sometimes that person may need to be removed from your child’s case. There are protocols in place to deal with each of these situations; all you have to do is voice your concerns. Getting upset (most of our instinctive first reaction) is not necessary and will only cause you further stress.
• Take care of yourself. It is not humanly possible to be there for your baby every second of every day. Trying to do so will jeopardize your health, your relationships, and keep you from being the great parent we all want to be for our kids. Get a full night sleep whenever possible, and take naps when you need to. Make sure you are eating enough and try to eat healthy, balanced meals (when you are stuck at the hospital, opt for the cafeteria over fast food & vending machines). Make time to get fresh air, sunlight, and a little exercise. A short walk in a courtyard or a nearby park will go a long way.
Take care of your spiritual health. I cannot tell you how many days my faith was the only thing getting me through. Spend some time reading The Bible, praying with others, and ask for people to pray for you and your child. There will be times you may be asked to leave the NICU before/during/after procedures or if doctors need some time to focus uninterrupted on your baby’s care; make sure the nurse has your cell phone number, then take the opportunity to visit the hospital chapel, if they have one. Times when you are not able to be with your child are often the hardest times, also making them the easiest times to pray. Finally, take people up on their offers to help. Let them keep up with housework for you, bring meals to your home or the hospital for you, buy you that much needed cup of coffee, or whatever else would make your life easier. Even if it’s just once or twice, some help is better than none, and if you truly have a need, it’s ok to ask even if no one has offered.
• Give yourself a break. Part of taking care of yourself is giving yourself permission to have a little time away from the hospital. It is ok to have lunch with a friend, go on a date with your spouse, attend a family gathering, or just spend an hour alone if you need to. As much as your body needs rest, your mind does too. And remember, most babies only get a babysitter for this kind of thing, your baby gets a whole team of nurses and doctors to watch after them when you are not there; they are in good hands.
• Above all, LOVE your baby. I know this seems like a given, but when your child’s life is in jeopardy, it can seem easier to distance yourself, or to build a wall around your heart. I can 100% guarantee, no matter what the outcome is for your child, you will never regret loving them with everything you’ve got. It can hurt, unbearably so when faced with the possibility that this day could be their last, but your child needs your love more than anything else, and it is worth whatever heartache it costs you to give them that. Dear parent, you can do this; you are not alone; and your baby is so worth it.