by Erika Goyer, mom to Carrick l (born and died in 1990), Quin (19), and Eli (12)
It’s true; nothing can ever really prepare you for being a parent. As a mom or dad you knew you would be a teacher, nurse and taxi driver. But you probably never thought you would have to add medical investigator, insurance expert and crisis interventionist to the list. Who knew how demanding this would be! And just when you think you’ve figured out your new roles – something changes. You have to find a new set of specialists, start a new treatment or investigate a new intervention on behalf of your child. The challenges can seem never-ending!
Fortunately, the skills you have gained in the neonatal intensive care unit (NICU) will serve you and your children for the rest of their lives. Here are a few things you may have already learned the importance of:
In the first critical hours of your baby’s life you probably felt that there was nothing you could do but sit and watch and wait. As time went on, you learned how to observe incremental changes in your child’s health. Those added up to major milestones as they graduated through the NICU. Your intimate knowledge of your baby’s highs and lows, successes and setbacks, has made you a keen observer. You have learned what to watch for. As your child grows and develops, you will be tuned in to their unique developmental journey.
Identifying the Experts
There is a lot to learn when your child is in the NICU. It is a foreign world with its own jargon, rules, procedures and etiquette. As you got a feel for “the lay of the land,” you probably discovered that there were some staff members who were more helpful than others. They became a lifeline. The professionals who took the time explain what was going on, discuss the consequences and educate you about your options became a part of your team. Those people are reliable experts. As your child develops, you will need to continue to look for smart, reliable sources of information. Knowing that you can recognize credible experts when you need them will help.
Following Your Instincts
Nobody knows your child as well as you do. They are literally a part of you. What we call parental instinct is the result of endless hours of back and forth between infant and parent. This intimate knowledge means that you may be the first to notice subtle changes that may result in larger consequences. Share your observations and ask questions. Insist if you have to. Professionals should appreciate your insight. After all, the goal is always the best possible outcome for your child. Nobody is more invested in that than you.
Knowing What Questions to Ask
We have to make choices all the time. When your baby is in the NICU you become keenly aware that the choices we make on behalf of our children can have irreversible, long-term consequences. Whenever possible it’s best to take time, gather information and discuss it with someone you trust. As you gain more experience, you get better at knowing which questions to ask. It’s always appropriate to ask, “How did you come to this decision?” “What experience do you have with this procedure?” “Who will be responsible for monitoring our progress?” “What are we watching for?” “Are there alternatives that might give us a better outcome?” Professionals should expect you to ask these questions and more.
Harnessing Your Emotions
Ending up in the NICU probably wasn’t a part of your plans. When you realize this is where your child needs to be, it can be devastating. It is perfectly appropriate to be shocked, sad, angry and grief-stricken. It’s also appropriate to advocate fiercely for your child. Your goal is to figure out how to do this effectively. You may need to steady yourself before important appointments or consultations. You want the providers you’re working with to not only see your passion but also to know that you understand the situation and appreciate their contributions. This way you can keep the conversation open even if you disagree.
Making a Plan
You have probably realized that even the best plans are no guarantee that things will turn out okay. But that doesn’t mean you want to leave things up to chance either. In the NICU your goal is to have your baby come home healthy and with as few complications as possible. But when problems arise you take time to gather more information and make adjustments. A good planner learns that there is more than one way to reach a goal. Learning how to plan while still being flexible will increase your chances of long-term success.
Writing Things Down
Take a cue from the NICU environment. Nothing is real until it’s written down. Telling somebody is great, but documenting it is even better. Whether it’s negotiating an insurance problem or dealing with your child’s school, you want to write it all down. You always want your notes to be as good as or better than the other side’s. Include dates, times, places, who you talked to, what it was regarding and what actions will be taken. Document everything. All this will go a long way in supporting your case and getting the desired results.
It can be argued that the most important role you will ever play as a parent is being your child’s advocate. Be sure to remind yourself that you are uniquely qualified for this position. No one knows your child as well as you do. And the harsh truth is, no matter how much other people care for your child, no one will ever care as much as you do. Others might know your child as their patient, student or client. But parents are the only ones who know the whole child. With that knowledge comes the humbling – and immensely rewarding – responsibility of looking after your child’s rights and best interests.
Erika Goyer is the mother of three boys and a family support navigator with Hand to Hold. Her oldest son Carrick Michael was born at 27 weeks gestation and weighed 1 pound, 14 ounces. Carrick died soon after his birth due to complications of prematurity. Erika went on to have two more high-risk pregnancies and two healthy sons, one of whom has developmental delays.