Raising Preemies: Does It Get Easier?

January 20, 2014

7 months 002

A new preemie mom asked me on my personal blog, “Does it get easier?”  – such a seemingly simple question to which I had no answer.  My answer would be “yes,” but I knew that was just our story.  It didn’t represent the entire preemie population, and had she asked me a year or two ago, my answer may have been different.  Questions like “why did this happen to me,” “when will my baby come home,” “what long-term issues will he/she have”, and “will it get easier” are questions that doctors can rarely answer, yet those are the types of questions that plague NICU parents.  We want to be assured that somehow our upside-down-turned lives will once again reach a point of normal even if that new normal holds no resemblance to the picture we had painted in our minds. 

Only a few weeks after our twins came home from the NICU, my husband and I attended our friends’ wedding.  An acquaintance came over to talk to me telling me she had heard all about our story from our friends.  She then went on to assertively tell me, “Oh, don’t worry – it will get easier.”  I so badly wanted to reply, “How do you know?  Have you ever had micro-preemie twins?  Have you ever fed your children through feeding tubes?  Have you ever gone to 5 or more appointments for your micro-preemie twins within a week?”  Instead, I nodded and walked away.  Only those who have traveled down the road of prematurity can understand.

I reached out to several fellow preemie moms to get their input on the matter of “does it get easier?”  Over 30 preemie moms responded – some whose children had little to no long-lasting effects of prematurity and some whose children had more involved medical diagnoses.  The majority of the mothers believed that life does get easier post-NICU.  Others said “easier” might not be the right word but instead “different.”   Many used the phrase “a new normal” in response to the question.

Emily K, eloquently stated, “Does it get easier? Yes. No. It changes. It isn’t life or death in an instant anymore, it’s therapies, appointments, and explaining over and over to people who can’t possibly understand even though they try. It’s reminding every person you encounter to wash their hands. It’s the joy of having your child sleep in their own room instead of in the hospital. It’s the exhaustion from holding them while they sleep because they have reflux instead of the exhaustion from staring at a monitor screen all day. It’s the joy of celebrating every single tiny milestone because you know how close you were to NOT celebrating them. It’s the constant reminder that your child was early and both your and their life is forever impacted by that. So does it get easier? Yes. No. It changes. But it really teaches you to appreciate what you have.”

Lindsay F, wrote, “I think for us it got easier in the sense that it was no longer life/death, minute-to-minute critical issues. Life adjusted and we found a new normal. However, at 2 yrs out, we now have different struggles- the CP diagnosis, the delayed motor skills, the daily therapy…it is still all worth it, every ounce, but our lives will forever be impacted by Pierce’s early birth.”

Jana K, explains, “The “is he going to die today?” moments of the NICU are in the past. When we left the NICU, we felt like we’d made it. Obviously we still had a few hurdles to jump over like getting off oxygen and the feeding tube and surviving the winter, but the immediate threat lessened and for us that was a huge relief. I think our perspective may be a little different because we lost one of our preemies, but we were just so thrilled to have him home and alive that everything else seemed more manageable.”

Many parents agreed that part of the reason things have become easier for them is they are better equipped to deal with the issues.  When you go from being a little over ½ way to ¾ way into your pregnancy to suddenly finding yourself in the NICU with a premature baby, you don’t have the time or knowledge to research the issues your child is facing.  You may still be in shock or dealing with medical complications of your own. 

Carissa V. tells how life has become easier for her when she writes, “I have amassed so many more skills and resources that help alleviate things that were huge struggles early on. Part of this is the grief process at work and the passing from shock into acceptance, but much more of it is getting the right care team in place, connecting with other families and community resources, adjustments within our family and close relationships that gives more space for the reality of what coping with a medically fragile child means in our day to day life.”

Melissa G. agrees stating, “I thrive on facts, knowing how and why things work, and what to expect. Suddenly having two preemies who were so different with unpredictable medical concerns was a shock to my system. As my boys have grown their medical needs have lessened and its been easier to predict how they will handle each challenge.”

This is not a comprehensive survey.  Prematurity is real.  It can and does leave lasting medical complications for many families.  I hope that some of these shared perspectives from moms who are caring for children with various issues related to prematurity give current NICU parents hope that life does evolve outside of the NICU walls into a “new normal”.

I love Mackenzie P’s response, “I think it depends on your circumstance. However, I would think the majority of us would say, “Yes” it gets easier. With time comes acceptance, expectations, and increased love and appreciation for your child(s)—no matter what the outcome. Those things combined make it easier.”

I’m posting a truly unflattering picture of myself to show that life after the NICU isn’t always easy or pretty (above).  In this picture, I had just pumped. I was feeding Camdyn her bottle which always took forever.  Once she finished what she could, I gave her the rest through her ng-tube.  I then set up Cade’s feeding through his ng-tube while working on all the techniques the speech therapist advised to teach him how to eat.  All the while, I was trying to give my oldest, Brenna, love and attention too.  Like other moms stated above, all the hard work was every bit worth it, and even though it was a challenge at every single feeding, it was still easier than being in the NICU.