Tips:

Surviving The NICU

by Kim R

  • Know that you are your child’s best advocate and only voice.
  • Keep in mind that medicine is not an exact science.  It is a “practice,” which requires a series of educated guesses, trial and errors.  The medical staff, while clearly experts in their respective fields, are only human and can make mistakes.
  • Establish a respectful relationship with your child’s doctors and nurses.  Respect leads to better communication and quality care, which is in the best interest of your child.
  • Keep a notebook and pen with you, write down your questions and take notes.  Maintain a daily journal to record progress on medical conditions, medications, treatment, and blood work.  Not only will this help you remember important information and recognize progress, but it will have a positive effect on the way the medical staff treat you and your child.
  • Ask for guidance on how to read and understand your child’s monitor and any other equipment around your child’s bedside. It will help reduce your stress if you understand what the alarms mean.
  • Don’t be afraid to ask questions and to ask physicians and nurses to explain and/or spell medical jargon.
  • Don’t be afraid to ask for second and third medical opinions on difficult matters.
  • Know that you are entitled to personally examine and review your child’s medical chart.
  • Consider using carepages.com to keep family members up to date.  It is less time consuming than calling everyone, and it can be difficult to use your cell phone in the NICU.  Also consider having a close friend or family member keep the site updated for you.
  • Consider asking a trusted friend to conduct medical research for you, if you are not able to do so yourself.  Your hospital should have a medical library and medical librarian.  Google with caution.  While the Internet can be helpful, don’t believe everything you read on the Internet and be aware that a limited amount of information can be a dangerous thing.
  • Talk to your insurance company to ensure the facility AND neonatologist AND specialists are in network.  Be aware that in some cases a facility may be in network, but a medical specialist practicing in that facility may not.  Confirm your deductible and any patient co-pay/financial responsibility.
  • Most medical updates are given at your child’s bedside.  If a private group meeting is called by the neonatologist or medical specialists away from your child’s bedside, then ask for a trusted friend, family member or minister to attend this meeting with you.  These meetings are often called to deliver difficult news and may require life and death decisions to be made. A spiritual counselor or friend can help you understand and digest the information.  They can also serve as another set of ears to help you remember what was said as you sort through things later.
  • Ask for time to make difficult decisions if you feel you need it.  However, be sure to ask if any harm can occur if a decision is delayed a few hours or a few days.
  • Ask a neighbor, friend, family or church family member to take care of any siblings, your home, pets or other issues, so you can maintain your presence at the NICU.
  • If problems arise with medical staff or you have concerns about how your child is being treated, then ask to speak with a nurse manager, patient advocate, or ombudsman.  The patient advocate or ombudsman may also be able to help you work through insurance problems.
  • The NICU is noisy given the sheer volume of alarms, machines, patients and parents.  Consider asking Child Life to bring a music mobile or CD player to play lullabies and to help build a more comforting, home-like environment for your baby.
  • Personalize your child’s environment. Ask if you can bring a blanket or cap, or booties from home.  Also, taping family photos to the isolette personalizes and distinguishes your child from the other infants being treated. It also maintains a connection to family for those medical professionals who care for your child while you are away from the NICU.
  • NICU staff are going to be focused on the most pressing and most life threatening issues affecting your baby.  They may not be focused on pain management.  Ask if your child is in pain and what can be done to minimize pain and suffering. Find out who is in charge of pain management.
  • Consider asking for a numbing agent such as Emla or LMX before (approx. 30-45 minutes before) IV’s or arterial lines are inserted or before blood draws. Also, some hospitals have a freeze spray they can use to numb your child’s arm or hand right before a blood draw or IV.
  • You may not be allowed to hold your child if he/she is on a ventilator or has an arterial line.  Ask if you can still touch your child.  Be aware that too much stimulation may be painful or upsetting to your child, so simply resting your hand above her head and at the base of her feet may bring more comfort than caressing her.
  • Read and talk to your child.  Let him know you are there.  Your presence and your love will give him something to fight and live for and it helps build the bond you both need.
  • Ask your nurses how you can help care for your child.  You may soon be able to change diapers, take a temperature, help with tube feedings and medications, bathe, and swaddle your child.
  • Don’t be afraid to ask for what you want multiple times.  If you want to hold your child and the answer is no, the answer may become yes in a day or two, or after the next nurse shift change or when a different nurse is involved with your child’s care.  Older, more experienced nurses are far more likely to grant this request.  Their experience makes them more comfortable with these types of situations.
  • Get to know your nurses.  You will find the neonatologists and other medical specialists have limited information and interact with your child less than the nurses do.  Nurses often have the “big picture” and have a broader range of information about your child.  Also, nurses work on the front lines and are often the ones who “save” children’s lives during times of crisis.   Also, if your child is in the hospital for extended periods of time, getting to know your nurses and being pleasant with them will motivate them to request your child for subsequent shifts.  This gives you and your child some continuity and improves the care and attention your child receives.
  • Consider writing a note of thanks or write a personal note about exceptional patient care, which can be included in an employee file.  Participate in any surveys so the hospital can identify areas for improving care.
  • Be sure to take time to eat and rest.  Parents cannot be in the NICU during a nurse shift change, so use this time to take care of yourself.  If you become worn down and sick, you will not be allowed in the NICU.  Your health is very important.
  • If you don’t live close to the hospital, inquire as to whether there are any sleeping rooms in the hospital or a Ronald McDonald House near the hospital where you can stay.
  • If you belong to a church, keep your priest, pastor, or rabbi informed.  Ask for your child to be placed on any available prayer lists.  If you do not belong to a church community and want spiritual counseling or support, the hospital will have chaplains available to you.
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