What Is Prematurity?
It is not what any parent wants. Ever.
It is a frightening ride into unknown territory.
It is being thrust into the hardest possible parenting struggle before you’ve even met your child.
It means a birth surrounded by fear and uncertainty rather than excitement and celebration.
It means NOT being together, parent and child.
It means NOT holding your baby.
It is feeling disconnected from the one person in the entire universe that you’ve been waiting to connect with.
It turns joyous expectations into unbelievable decisions to make.
It means hearing words like “disability, seizures, blindness, survival rates” when what you hoped to hear was “Congratulations! Perfection! Adorable! Wonderful!”
It is having to ask permission to touch your very own baby.
It is being told, “no, you can not touch your baby right now.”
It is waiting hours, days, even weeks before even being able to hold your baby.
It means seeing your very fragile, frightfully tiny baby covered in so much equipment that you can barely see the baby beneath it all.
It means having to say goodbye and walk away from your baby, day after day.
It means crying when you leave, night after night.
It is learning about high tech medical equipment like ventilators and feeding tubes when you’d rather be learning about baby strollers and diaper wipe warmers.
It requires that you meet more people than you can possibly remember, all of whom seem to know more about your own baby than you do.
It means meeting nurses who will be diapering your baby, feeding your baby, bathing your baby and cuddling your baby when you desperately want to do it yourself.
It means learning so much about baby care from strangers — your NICU nurses, respiratory therapists, physical therapists and more.
It means getting to know people who care about you, and your baby, more deeply than you expected.
It is learning new terms that you never knew existed, like CPAP, bradycardia, desat, and apnea. Words you’d rather never know.
It is getting up all through the night, every night, in an empty house with an empty nursery for a date with a milking machine. Or it means losing the hope of feeding your baby your own milk.
It is learning to find your parenting instincts under incredible stress.
But it is learning to trust your instincts, and when you find yourself right, it’s more rewarding than you ever could have imagined.
It is learning to do diaper changes with iv tubing, monitor leads, PICC lines, and pulse ox’s in the way and learning to change them like a pro.
It demands nearly impossible patience. But the satisfaction when the patience pays off? Priceless.
It is celebrating what would have seemed like trivial accomplishments, such as a 5-gram weight gain or a tablespoon of milk taken from a bottle. Or just getting to hold your own baby.
It is celebrating with other families who understand exactly what you’re going through.
It also means feeling quite alone, because your old friends and your family don’t really understand.
It is crying more than you ever hoped to cry, and then crying some more because of what the other families beside you are having to go through.
It is struggling to keep the faith, and trying to make sense of it all.
It is emotional overdrive — jealousy of full-term moms, anger at your body for letting you down, guilt for something that you absolutely couldn’t control.
It is learning to love the nurses who teach you well, who help you smile, and who love your baby.
It is feeling a new-found gratitude for the littlest things.
It is finding new friends you would have never made before this, ones who understand this crazy, unique experience.
It is gaining more and more confidence in how to care for your baby, after countless days and nights in that beeping, sterile environment.
It is disbelief that your baby, who started out so tiny and so fragile, is now ready to go home.
It is fright at the thought of losing the monitors that alert you to every breath and heartbeat — the monitors that have literally kept your baby safe all this time.
It means feeling terrified of taking your baby home while at the same time being more excited than you ever thought possible.
It means living with all of this anxiety, fear, and worry, and yet allowing yourself to love completely and hope deeply in spite of it all.
It sucks. But it is also incredible, humbling, inspiring and beautiful.
It is parenting.
It is love.
For some families, it’s not this hard. For others, it’s much, much harder. And let’s never forget the families for whom prematurity takes the ultimate toll. Because for some, prematurity means never bringing their baby home. It still means love, and it still means parenting, but it means an unbearable loss as well. How can you help?
How to Help
Prematurity is an enormous global problem. There are many wonderful organizations trying to make a difference. Here are a few sites worth visiting:
US Based Prematurity Support
Every Tiny Thing - Online store with NICU and preemie-specific gifts and products Grahams Foundation - Empowering parents of preemies through support, advocacy and research Hand to Hold - Preemie parent support with peer support, education, and resources It’s a Preemie Thing - Adorable, fun T-shirts that celebrate everything preemie Little Giraffe Foundation - Funding research and parent support for prematurity March of Dimes - Improving the health of babies by preventing birth defects, premature birth, and infant mortality. NICU Healing - NICU specific individual and family therapy, as well as education & supportive blog NICU Helping Hands - “Family support for fragile beginnings” Parijat Deshpande - Support and resources for mothers experiencing high-risk pregnancies Peekaboo ICU - NICU nurse insights into the journey of prematurity Zoe Rose Foundation - Support, education, and advocacy for families of premature infants
International Preemie Support
Bliss - Prematurity support (England) Neonatal Trust - Prematurity support (New Zealand) Miracle Babies Foundation - Support, education, and resources for families of premature and sick newborns (Australia) National Premmie Foundation - The national organization in Australia for parents who experience premature birth or neonatal loss. It’s the largest network of preemie support in Australia.
