5 Things to Expect as the Parent of a Preemie

When my son was born at 28 weeks gestation, my husband and I were completely unprepared. Being a first time mother and having a perfectly healthy pregnancy up until the day my water broke (in the middle of the psychiatric hospital where I worked), we had not planned for a situation in which my son would spend his first seven weeks post-birth in the NICU, away from his family and unable to be held at all for the first four days out of the womb. Staring at my 2 pound, 14 ounce son through a glass Isolette was terrifying, and resources for the emotional and mental support of parents who were in our position seemed limited.

Now, 19 months into our experience, we are still reminded every day that our son came into this world three months early, mentally unready and physically unprepared. We have been very fortunate with our son’s health, and we can do nothing but give thanks that our miracle child survived. But as we approach his second birthday, I look back on some of the things we have experienced throughout this adventure.

1. Fear. The NICU is a scary place. There are continuously beeping monitors, humming computers, staff racing against the clock to save tiny, medically fragile newborns, parents crying, families sleeping, and a bond with other parents and the staff keeping your child alive that is unparalleled to any you will find outside of those NICU walls. But as much as you yearn to take your child home with you, as much as you prepare to take on the responsibility of caring for your premature child just as well as those trained professionals did, nothing compares to the fear you feel those first few nights (or weeks) at home with your preemie. With no computer screens to reassure you that your child’s heart rate is within normal limits and that his oxygen rates are stable once you leave the security of the NICU, you begin obsessively checking on your preemie every time he closes his eyes. You become hypervigilant in your respiration counting and you listen for the smallest sound of a steady breathing as your preemie sleeps in his bassinet next to your bed at night, just so you can keep him within eyesight at all times. Eventually the fear lessens, and you find yourself (and your preemie!) sleeping for longer stretches of time, but as much relief as I felt the day we “graduated” from the NICU, the fear multiplied tenfold as soon as we arrived home.

2. Therapy. Not the kind that involves a well-intentioned third party listener who has mastered the reassuring head nod and offers a slightly uncomfortable couch to sit on (although you may need that too!). Life with a preemie is full of everything from weekly physical therapy to monthly home visits with an early intervention case manager.  Nearly two years into our Preemie Experience, our son’s therapies have only increased as he has aged and as his prematurity has become more evident the further and further he falls behind his peers. Our normal week consists of feeding therapy on Mondays, physical therapy on Tuesdays, monthly meetings with an early intervention case manager, and for a while, we also had occupational therapy on Thursdays. Our son has special shoe inserts to help support his ankles, and at 19 months old he is still unable to walk. So we continue therapy. Therapy eventually becomes a way of life, and as tiring as it can be, you begin to find a community within the walls of the Children’s Rehabilitation Center waiting room. Each week, you see the same children with their supportive and loving families. You see kids of all ages, with all disabilities, delays, special needs and reasons for being at the center, and you start to feel at home there. Within those walls there is no judgment, no questions about why your toddler is unable to walk, or why he is wearing special shoes. It becomes a home and a safe haven, much like the NICU once was. And for that, you are grateful.

3. Comments from strangers, friends, and well-meaning family. “Wow,  he’s small for his age!” the woman at Kroger will tell you. “Is he running yet?” the cashier will ponder. “I bet it’s tiring chasing after him! Is he walking? Talking?” For the first few months home, you will be eager to share your story with anyone and everyone who will listen. You will excitedly tell the man on the sidewalk about all that your son has been through. LOOK AT MY MIRACLE CHILD! you will want to shout. Eventually, as you fall into your normal routine and your child’s prematurity simply becomes your new way of life, the well-meaning comments from others become tiring. Even the most thoughtful and supportive friends will say things like, “You’ll regret wishing he’d start walking when you’re chasing him everywhere!” All you can think of when you hear comments like that is the hours of physical therapy your son has endured, the tears streaming down his face as his feet were fitted for special shoes, the frustration you witness in his eyes every time he tries and fails to take a step. You think of the times you cried on your husband’s shoulder as your baby missed yet another milestone, and as you watch your friends’ kids meet and exceed each and every milestone they face. But then you look down at your smiling preemie’s face, full of hope and love and simply needing your support, and you realize that it doesn’t matter WHEN he reaches any milestones. All that matters is that your child is happy, healthy, and hopeful…and suddenly no one else’s comments matter.

4. Doubt about your ability to endure another pregnancy. As a woman who’s body gave up on her first pregnancy after only 28 weeks for reasons unknown to any OB specialists, there is an intense fear of going through another pregnancy that will result in another premature child, or worse. I think about how much we would love another child, how strong our family bond has become since going through my son’s prematurity experience, and the depth of the love I have for my son. I see others with their newborns and long for another baby. But as strongly as I feel about wanting another child, I feel equally selfish and guilty for wanting to potentially put myself, my family, and another child through that Preemie Experience once more. I feel like I don’t deserve to try again, because my body was not capable of carrying my first child to term. I feel scared and afraid to tell people that I would love to have another child, another sibling for my son and stepdaughter, because I put myself at risk for their judgment and their curiosity as to why I would wish that upon myself and my family. “Do you really think that’s a good idea? After all you’ve been through?” I’ve been asked (those well-meaning friends…). And I begin to doubt my desires and ability to carry another child to term. At the end of the day, however, it will be a decision between my husband, myself, and my doctor, and regardless of what we decide, our family will continue to be full of nothing but love and support for one another and our children.

5. Love and gratitude. The love you feel for your own child is unlike any other love in the world, but when you have a child who was born too soon, a child who doctors told you may have breathing problems, severe handicaps, or may not even survive, it’s hard to feel anything but gratitude. The nights can be long and tiring (we are currently battling 18-month sleep regression), but looking down at my son’s smiling face each morning while he stands in his crib reaching for mommy is nothing but a blessing. Our son has taught us the meaning of strength and perseverance, and we watch him grow and achieve new milestones (no matter how small!) while cheering him on each and every day.

Having a premature child is something you can never fully prepare for mentally, physically, or emotionally. Preemie parenting is full of setbacks, obstacles, celebrations, frustrations, support and resources you never knew existed…and so, so much love.

19 months ago, our son was born too soon and abruptly taken away from us at only 2 pounds, 14 ounces. He was intubated and taken to his first home, a glass box safe within the NICU walls.

Today, that child is my hero.

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