When a premature baby is born, not only does the baby come into the world early, but the parents are unexpectedly brought into the world of their premie newborn with little or no preparation, forethought, experience or training.
Our dreams of starting or adding to our families have unspoken rules that we may not be aware of until they are broken. We assume our bodies will protect our children for a full term birth.
We believe that after labor and delivery we will be holding our babies in our arms and then bring them home with us. We assume that our first hundred and fifty concerns will follow from common sense, if not hormones, inexperience or just getting to know how this baby is wonderfully unique.
No woman I have ever met has said she had the Perfect Birth Experience, or anything near to what that phrase meant to her. Those who planned and practiced for natural childbirth may be bitterly disappointed to have had a C-section, and those who experienced natural childbirth may have been so surprised by the unexpected that they were not able to maintain composure even for the video camera, or those who were required at or invited to the birth.
After months of childbirth education classes with my first child, I was suddenly aware that I needed much more information about the hours and days following the birth of The Baby. The only topic that I could remember that even mentioned the first weeks of a newborn life was a short session about Cesarean Section Recovery.
Our instructor was a kind and experienced woman who suggested that if we did not have the birth we planned and dearly desired, we could wait a few weeks after we came home to visualize that experience while holding our babies close, and add that memory to the reality that shocked or disappointed us.
My firstborn did not arrive by C-section, but was born within three hours of my first contraction. The 'discomfort' of labor that had been mentioned seemed a huge understatement - I woke up in labor feeling like I had been hit by a truck.
She arrived so quickly that my body did not have time to prepare, an unusual situation called "precipitous labor". Although I treasure the moments just after her birth when she clung to me so sweetly, it did not last long enough due to the medical attention I needed afterward. Our hospital had a 'rooming in' policy so she slept in a bassinet next to my bed and I could look at her during those days of recovery, and hold her as often as possible.
When she came home, I did visualize a more perfect birth experience, and held her for almost as long as I wanted. It was a revelation to me that I'd be happy never to let her go. I realized then that I would always worry about dozens - or hundreds of things that might challenge or hurt her; and that no matter what she accomplished, wanted, or believed in her life, I would be overwhelmingly proud of her. I wanted so much for her, and was shocked that frivolous thoughts like giving her a sports car when she was sixteen seemed natural and easy when she was just a few weeks old.
In what could have been an effort to be as completely different and individual as possible, my son was born early, and via C-section. Looking back, I understand how fortunate I was that his sister had taught me so much.
I ached to hold him, but he was being whisked away moments after he was born. I remember someone saying "Wait!" and feeling there should be some kind of anesthesia for the pain from that word. But that first one was not for me - my doctor was calling back my son so I had a moment to feel his sweet fuzzy head against my cheek before he was gone again.
My son was only slightly over a month early, and there were many words I heard in his first days that stung, some that bludgeoned. I remember it was a long, uncomfortable walk to the nursery where he had to be, and how my heart leaped up when I'd see his precious little face.
He was one of the first babies born nine months after a big storm in that part of the country, and in the first three days of his life three times as many babies were born as usual in Annapolis. I always have to remind myself that is why they did not tell me they had attached him to a heart monitor; they were so busy all they had time to say was if I felt up to it I could walk down and hold him for a while.
I don't know why I did not notice the wires under the blanket; maybe my focus was just on memorizing his face and I was overwhelmed by my need to nuzzle that sweet little head. I lifted him only slightly and stopped abruptly as I tried to understand why these wires seemed to be tying him down.
A nurse came running and told me the news, and then said I could feed him a bottle if I was up to it. I had been holding him half an inch above the medical bassinet and carefully let him down. I was a little bit in shock, but tested the bottle and leaned in to feed him.
Another nurse passing by saw me and grabbed my arm, saying he could choke taking a bottle on his back, and some other comments that I don't remember, as I realized I had put him in jeopardy because we were in such an artificial environment I did not remember that basic rule of newborn care.
Although I stayed in the hospital extra days due to the C-section, my son stayed longer. Leaving the hospital without my baby was utter desolation. I longed to be with his sister, who I had seen briefly only twice since he was born, and without that craving for her, they would have needed to drag me away.
Because I could not drive for more than a month after the Cesarean, I had to wait for rides back to the hospital to be with my son, when someone else was available to care for his sister. He had a problem with jaundice and it was a shock to see him wearing a little blindfold to protect his eyes, with no blanket on his tiny little body.
Each time I was able to visit, I had to leave him there. Many times I felt I would physically shatter and the nurse would come in to find just a pile of broken glass next to my son's bassinet. Of course I had to keep myself in one piece for his sister, and her merry little spirit was strong enough always to draw me back home.
Although I remember so many small individual traumas, an overwhelming set of complicated feelings and worries for my son, and an unexpected web of concern for my daughter, that part of the experience was a fraction of the whole series of unfortunate events and adventures of those first weeks.
I discovered that family and friends needed reassurance from me, and they needed to be able to maintain some emotional distance from the most difficult parts of his story. On a more practical level, most could not be expected to deal with the many inconveniences of the situation for the long term.
During my most vulnerable time, I was learning too much about the prejudices and unpleasant worries of those who cared for me, not to mention all I was learning about my own.
I had said when my daughter was born that it is not fair that those wonderful newborn weeks happen just after the mother has gone through pregnancy, labor, childbirth, and whatever follows as our bodies, however miraculously reusable, develop us into mothering people.
This is doubly true when a baby is born pre-term. Everything in us wants physical contact: to nurture, protect and enjoy the new baby. And yet, we might need to be taught or reminded when and how to touch them.
Everything fierce, loving, happy and competent in our beings is directed toward one little person during their most vulnerable time. But at times we may be unable to absorb everything - or anything - that medical professionals tell us is important to know.
It's a difficult task to be an ambassador to friends and family, an unofficial medical student, and a caregiver without the training, experience or emotional distance that a professional provider needs for licensing or long term job satisfaction.
Other mothers and babies have faced greater challenges than I did with my son. Many are going through daily traumas right now, on 36 hour day schedules, as their babies born early struggle through the weeks they would have been protected during the final months of the pregnancy.
They might not know where to find their baby later if they go home for a few hours to take a shower. There is no way to know what medical information they will need to be learning from day to day, where their support systems might fail, and how torn they will feel between caring for their newborn and others who are precious in their lives.
Sometimes the experience is so overwhelming, we can't fit all the most important pieces of the puzzle of our lives together, in our thoughts, or schedules.
Other parents have learned so much from their own individual experiences with prematurity, and caring for preemies in the hospital and at home, they feel the need to share their insights as well as information and support they've gathered from medical professionals and others, to share with those who were also unexpectedly plunged into a life of parenting a premature baby, or two.
They may feel compelled to reach out to other parents and the medical community because they see where they needed help that was not available or was unrecognized.
Many families are doing all they are able just to care for their baby during the long road back to what passes for ordinary life. For many of us, the lifelines, specialized medical care, and unexpected kindnesses we encounter, are all that keep us afloat in what seems like a storm of unsettling experiences.
I remember thinking that I had to be at least as strong and brave as my sweet baby boy, and doubly so for the sake of his older sister. I am still learning from both of them every day.
Browse at your local bookstore, public library or online booksellers like Amazon.com for titles like The Premature Baby Book - Dr. Sears and Fragile Beginnings: Discoveries and Triumphs in the Newborn ICU
URGENT: SimplyThick recalled due to life-threatening complications in infants, especially premies. Do not administer
Dealing with the invisible disabilities of preemie babies
First Parents of Preemies Day Friday, March 23, 2012
Post Traumatic Stress Disorder a Concern for Parents of Premature Babies, NICU Stays
Is Stress to Blame for PreTerm Births?
Here are some articles, websites and discussion groups that focus on prematurity, preemies in the hospital, and initial months at home:
Helping Parents Cope with a high risk birth - Terror, Grief, Impotence and Anger
by Michael T. Hynan, Ph.D. University of Wisconsin-Milwaukee
A helpful discussion for extended family, friends and health care professionals
The Preemie-L Discussion Forum
They recommend you set your subscription to: No email, web only
Information for parents and medical professionals
A parent's perspective, resources and links
Parenting Babies and Children
LLL - Breastfeeding Premature Infants
La Leche League resources at LaLecheLeague.org
BellaOnline Breastfeeding Website
Breastfeeding the Premature Baby
Logan's G-tube Accessories
Iron on patches that provide access to G-tubes
without damage to clothing - PEG and Button tube styles
Carriagehouse Creations features Special Needs EZ Access Shirts for
babies and children with feeding tubes, and other handcrafted items
For women experiencing a complicated pregnancy, parents and extended family.
Multiples, complications, related diagnoses, loss
Spanish Language Information on Preemies at the Tiny Miracles Website
Tiny Miracles Foundation - dedicada a ayudar a las familias con bebés prematuros
Historias de Milagros Stories of Tiny Miracles
Glosario de términos comunes
de la UCIN NICU Terms in Spanish
Nacimiento Prematuro - March of Dimes Information in Spanish on Premature Infants