5 Tips that Will Help You Thrive in the NICU and Beyond

       Today is World Prematurity Day.  I'll be honest.  Until last year, I would have known nothing about it.  But things have changed.  What?  Over the past year, my wife and I have become the proud parents of a preemie and NICU survivor.  One of the things that amazes me about premature birth is it's prevalence.  It is more common than I previously realized, yet there is so little public exposure about it.

       In the following post I hope to spread a bit of awareness and give a quick survival guide to parents with children currently in the NICU or family and friends who have other friends and family with a child in the NICU.



1.  You CAN Do It.

       Over and over again this is what it came down to for my wife and I.  Without going into too much detail, our daughter was in the NICU for 149 days.  It is hardly the way you envision the first five months with your child.  You have to be prepared for changes, which happen almost daily.  You're lifestyle is going to be drastically different.  Things that seemed momentously important before will now seem as minor details.  You will laugh.  You will cry.  You will get frustrated.  You will be exhausted.  But at the end of it all, you will count it as joy.  You will emerge with a new appreciation for yourself, your family and your child.  It will be tough.  Please don't misunderstand me, I would not wish for anyone to go through what my wife, my daughter and I had to go through.  But for those who are in that situation now and for those who may go through it in the future:  YOU CAN DO IT.  YOU WILL DO IT.  You're tougher than you think and capable of much more than you believe.

2.  Ask Questions.

      If you are in the situation where your child has to have a NICU stay, this is imperative.  Your child will have a team of doctors assigned to him/her.  These doctors will ask you every day if you have any questions.  If you do, then ask, no matter how small you think the concern is.  One small thing could be key to the treatment of your child and your child's progress.  You will also learn that different doctors have different opinions on the methods and ways of administering treatment.  It is important for you to know where they are coming from, what their rationale for proceeding in a certain manner is and comparing that with the opinions of other doctors on your child's team.  You want the best for your kid.  Sometimes a doctor's decision may not be the best one, that's why it's important to know where they are coming from AND to talk to the other doctors.  All that being said, I would suggest refraining from doing independent research.  Trolling the internet for how to treat your child in the NICU is only going to make you anxious, and quite frankly most of will be of no use to you.  Most NICUs also have a resource nurse on duty for each shift.  This nurse is assigned (and paid to do research for the doctors and patients.  Make friends with the resource nurse and do not be afraid to have them look something up for you.

          
 3.  Spend as Much Time as You Can with Your Kid

       This should go without saying, but it is essential for so many reasons I possibly could not list them all.  It works hand in hand with #2 in terms of treatment because you will spend more time with your child than the doctors and knowing how your child has been acting and reacting to treatment is very powerful in getting your child exactly what he/she needs.  Your child has a unique personality.  Our daughter weighed 2 pounds, 2 ounces when she was born, but even with such tiny stature, even plugged into all the machines and monitors, she was fiercely her own person.  Getting to know your kid at this stage in life is a gift that most parents don't get.  Enjoy the privilege.  Your child is aware of and enjoys thoroughly your presence.  In fact, your presence alone may be the most powerful instrument in their healing, growth and development.  Our daughter met and has continued to meet many milestones much earlier than her medical team predicted.  We have experienced similar testimonies from other families who had children in the NICU.  Medicine and treatment is important, but do not underestimate how powerful your touch, your voice and your presence can be in the life of your child.  Spending time with your kid gives him/her this much needed experience and it gives you a more informed voice in advocating for your child when treatment progresses.


 4.  Take Care of Yourself

       This may seem to contradict #3, but it is essential and the two actually work together.  You want the time with your kid to be high-quality time.  If you aren't taking care of yourself, the time you spend with your child will decline in quality.  You may start to resent your child and begin down the spiral of self-pity.  This is not a good place to be in at any phase in your life, but especially when you have a kid in the NICU who has to get up and fight everyday just to stay alive.  It is imperative that you find time to relieve stress AND debrief with your spouse.  Go on dates together.  Do things you enjoy.  Take a little time to spend on a hobby.  Eat well.  Exercise.  Get rest.  All of these will make your child's NICU stay more manageable.  If you feel better, so will your child.  For me personally, I took up training for a 100 mile footrace during this time.  It had long been a bucketlist item for me.  The training forced me to focus on something other than my child's situation.  It distracted me from worrying about things I could not control and the physical exercise was a great stress reliever.  Take care of yourself too.  Do not feel guilty about going out and doing something you enjoy every once in a while.  You'll be happier.  The ride will be smoother and your child will notice.



 5.  Don't Expect People to Understand

       Sharing, being honest with your emotions and being proactive about your child's situation is important.  It will help you make sense of things and come to terms with NICU life.  It will be a roller coaster ride as you may be confronted, sometimes daily, with very hard decisions.  As you share with friends and family, it is good to build a support system, but do not expect them or anyone else to fully understand where you're at.  Don't expect them to "get it".  They won't.  That's okay.  People mean well, but they may say some pretty asinine things in their attempts to "help."  If I had a dollar for every time someone I wanted to throw someone out a window for saying something ignorant about my daughter's NICU stay, I would be a billionaire.  It is important to see their intention and not the effect.  People you thought were close to you may be scared of your situation and may make themselves unavailable.  Others, whom you may not have considered close, will step up to the plate big time.  It's just the way things you are.  Go with the flow.  Try not to be offended.  But ultimately, you are in control of how you feel and you are the only one who knows what it's like.  Talk to other families in the NICU.  They can be a big help.  Also the doctors, nurses and other staff, who work in this environment day in and day out have tons of encouraging stories when things seem hopeless.  All in all, do not let people's misguided attempts to help, or others non-attempts cause you to grow callous.  They don't understand.  and. that's. okay.  When you leave the NICU the emotional weight of your experience will go with you.  Letting go of any negativity related to your interactions with others during your time in the NICU is essential to transitioning to life back at home.


       Certainly there is much more that could be said.  I hope this was a helpful down and dirty guide for those going through a similar experience.  If you have questions or comments feel free to email me at mmonk23@gmail.com.  You can also see more about our journey in the NICU by checking out my wife, Stefanie's, blog.  Here's her latest article in regards to Prematurity Awareness month:
http://stefaniedreamswithjesus.blogspot.com/2014/11/olives-story.html