The Top 10 Rules for Preemie Parents

OnlyTrueNorthGuest, Guest Post, Preemie parenting2 Comments

It is my joy to feature a guest post from the lovely, Megan Lubin of His Middle Name. Megan is no rookie to the preemie parenting gig and she draws from her own story to help others journey towards healing. Enjoy and be encouraged, we are in this thing together!

As a preemie mom four years out of the NICU, I get asked all the time what is the best advice I would offer to other preemie parents. The first time I heard that question I didn’t know where to begin. I stuttered and stammered for the right words; encouraging words. I had so much to share … but where to begin? I definitely had a few words of wisdom that I felt were standard; words that I felt weren’t a big leap from the usual advice. However, there were many more that were born out of my own experience with prematurity. How could I choose the right words to comfort those parents in the NICU or newly home? After some deep reflection, I was able to compile a list of ten guidelines that I felt were vital in moving forward and keeping the spirit happy. Let me preface this by sharing that I don’t have a PhD nor do I feel I am the authority on parenting in any way. I’m just a preemie mom sharing some tips – some that have worked for me and my family, and some that I wish we could have learned earlier. Tonight, however these words find you, I hope you can find relevance in them and maybe take a few along with you in your own journey.

The Top 10 Rules for Preemie Parents

  1. Acknowledge the miracle. All children are a blessing, however, as preemie parents we know that our children are especially precious because of the way they came into the world. It’s just a different experience – not better – just different. And if Dr. Seuss has taught us anything it’s that there’s nothing wrong with being different! Those milestones all children celebrate are that much more special with preemies because they are reminders of what could have been; that life has thrived against all the odds. Yes, thrived. Celebrate your miracle!
  2. Stop blaming yourself. You did everything right, didn’t you? I know I did. I took my vitamins, saw my doctor regularly, didn’t eat any fish or drink coffee and I still delivered my son 14 weeks early. My body, created to be fertile and carry a growing baby, had failed me. Even worse, I felt it had failed my son too. There was this looming sense of shame that I couldn’t shake. If you have struggled with feelings of guilt, you must know that it’s not your fault. Sometimes our bodies, strong and amazing, falter. Although most women who deliver prematurely will never learn a reason as to why, here’s some recent research from the March of Dimes: http://www.marchofdimes.org/news/new-research-finds-babys-genes-not-moms-may-trigger-some-preterm-births.aspx
  3. Trust your instincts. The best parenting advice Brad and I ever received was from our son’s awesome NICU nurse. Sara, a neonatal nurse and a preemie parent as well, shared this little nugget of advice that was so simple yet so profound: “Doctors are there to advise, but you are the parents.” I have carried that little nugget of advice ever since and it has made all the difference! It doesn’t matter if it’s a mosquito bite or malaise, a temper tantrum or a temperature – if it doesn’t feel right trust your instincts because YOU are your child’s only true advocate. I encourage you to create a partnership with your pediatrician and trust their recommendations, but ultimately, you are the parent and you have the final say.
  4. Healing is a part of the journey. I’ve never heard of an easy premature birth … because they don’t exist. Premature birth is unexpected, dramatic and blistering; nothing in your bag of life experiences prepares you for it. It’s not only physically demanding, but mentally and emotionally draining as well. No matter how much coffee you drink you’re functioning on “autopilot” because you’re solely focused on your baby and whether they had a brady or if they needed a blood transfusion. How do you rejoin the rest of the world after an experience like that? Well, the healing starts in small ways – grieve, pray, write, craft, etc. – just let go of some of that pain so you can begin to heal your heart from the inside out.
  5. PTSD is real. There, I said it, so now we can get past that big ol’ elephant in the room. Whether you’re experiencing flashbacks or anxiety don’t be afraid to call it what it is. PTSD can rear its head in so many different ways, too. Some preemie parents have described feeling panicked by their child having a minor cold because it takes them back to when those types of medical events were life-threatening. Others can’t stand the sound of a beeping noise, as it’s an instant trigger. If you have experienced what you believe are symptoms of PTSD, there is no shortage of help out there for you. Don’t be afraid to tell your doctor or submit to therapy – you deserve health.
  6. Never compare your child to another child. This one’s a biggie because our very culture places an emphasis on measuring everything around us, and our children are no exception. We’re sizing up our neighbor’s full term baby and wondering what percentile the toddlers in our child’s My Gym class fall in to. Within limits it’s healthy to have standards to compare your preemie’s growth, but when it becomes competition, that’s when it can become a negative fixation. Every child has different genes, gifts and abilities. Learn to recognize your child’s and encourage them with love and acceptance.
  7. Don’t allow others to determine your parenting style. This actually comes straight from my husband Brad. He shared with me that if he could have done anything different, it would have been to better explain to our family and friends why certain rules were set up after we came home from the NICU. In hindsight, I admit it probably would have saved some hurt feelings on both ends. Unless someone has been through a NICU experience they don’t understand what it does to you and how it shapes the type of parent you become. Helicopter parent or not, healthy boundaries are a must when dealing with your loved ones.
  8. Don’t take it personally. This is a touchy one because when said in the wrong context, it can rub an already sensitive preemie parent the wrong way. When you’ve given birth prematurely it seems everyone around you is delivering babies full term. Log in to social media and you’re bombarded with beautifully styled maternity photos and perfectly posed newborns. I’ve spoken with so many preemie parents that have said this is one of the most difficult things they’ve encountered because they don’t understand their own feelings of longing and sadness. I promise you that you are not a bad parent for wishing you would’ve had a longer pregnancy or could’ve taken your baby home after two days. This is where “don’t take it personally” comes in – it’s a gentle reminder that your sister in law or coworker’s baby joy isn’t a slight at your experience. It may take some time, but eventually you will find that middle ground where you can feel happiness for another momma while also accepting that you didn’t get to experience some of those cherished moments.
  9. Reach out to your preemie community! Life after the NICU can be especially overwhelming for parents of preemies, but you are not alone. Connecting with others who have been there or shared a similar experience can be not only validating but so very healing. There are many ways to get involved including joining your local March of Dimes family chapter, forming a March for Babies team in honor of your preemie’s life or joining a local peer to peer support group. Not ready to go all out? There are also private groups and support pages via social media where you can share your birth story, ask questions or offer advice to another preemie parent who may be struggling. Our preemie community is strong with hope … let us lift you up!
  10. Take care of you. Listen up preemie moms and dads because this may be the most important tidbit I share because it’s the hardest to actually do! It’s something I wish I would have done more of myself, and it starts with little things while your child is in the NICU. Try actually sitting down to eat, going for a run, getting a pedicure, or start journaling. I know these things are hard, but you have to have some “me time” (even when your child is in the NICU). Once your baby is home and when you’re ready, try to take a vacation or plan a spa day. I know it’s hard to imagine being away from your child when you spent so many nights without them, but I promise you you’ll be rejuvenated. When you take care of yourself mind, body and spirit you’re able to give that much more to your preemie. If you make taking care of yourself a priority, those good habits you’re putting in place will carry on when your child finally comes home from the NICU too and will be the example of self- love that they’ll learn from and mirror for the rest of their lives.

  

 Megan Lubin is the founder of His Middle Name, an online resource that provides support, advocacy and education initiatives to parents of preemies and those who have experienced pregnancy complications. She is a Regulatory Affairs Administrator and works in Cancer Research. Megan lives in Philadelphia, Pennsylvania with her husband Brad and four year old son Sutton Matthew. To learn more about her story, please visit www.hismiddlename.com or for a more interactive connection, visit the His Middle Name Facebook page here: https://www.facebook.com/HisMiddleName

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2 Comments on “The Top 10 Rules for Preemie Parents”

  1. Karen Rozier

    Excellent advice. I wish you had written it 17-years ago but it is still true and helpful for me to remember as our son approaches his 17th birthday and we continue to ignore those who think they know where he should be developmentally.

  2. Nancianne

    Every single one of these struck to the core. I changed after the NICU and we still have health problems. I’m a helicopter mom with PTSD and anxiety. I have a job now, hadn’t had one since I went on bed rest. My preemie son and his sister are in a developmental school. The NICU never leaves you, and will pop up out of nowhere, just when you think you may be healed. I’m also in therapy and I’m glad. Its so important to get help and to keep a bond with your NICU family 🙂

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