Yesterday was my niece’s first birthday. A milestone for any child, but for my niece, it was an especially poignant one, reminding us of just how far she’d come and how difficult her journey was.
A year ago today, I was anxiously pushing through a 12-hour drive to get to my sister and her family, not entirely certain what I would find when I got there. It was not a trip I care to repeat.
Due to complications in her pregnancy, possibly related to a recently discovered health condition, my sister had been hospitalized and put on bed rest a week earlier with the expectation that the baby would absolutely have to be delivered 10 weeks early. Her doctor didn’t want to risk anything earlier than that, but a very early birth was inevitable.
The morning before my trip, the doctor had explained to my sister that, because of the baby’s size – at 27 weeks, she was only the size of an average 23-week pregnancy – her initial survival was entirely dependent on whether she was large enough to accept a breathing tube. Usually any child smaller than 24 weeks simply doesn’t have airways large enough to accommodate even the smallest diameter tubing. He went on to say that it was extremely important to delay her birth as long as possible to give her time to grow and develop and improve her chances of survival. As of that day, the doctor gave her a 50-50 chance.
My mom called and relayed all of this to me after dinner. Less than an hour later, she called me back – the baby was suddenly in serious distress, and there was absolutely no choice but to deliver NOW. Thirteen weeks early, and under that 24 week size mark.
Cue what certainly is a contender for the longest half hour of my life. Longer for my sister (who had to be placed under general anesthesia with no idea what she would wake up to) and her husband. I can’t imagine what they went through.
Finally, I received a texted picture that made me choke back tears: an impossibly, heart-wrenchingly small baby – with a breathing tube!
I was only able to stay with my family through the first small part of the long ordeal that would follow, but the emotional turmoil was intense. My first moments seeing her were nothing but fear and panic. How could it even be possible for such a tiny, fragile little thing to survive? There were many good days with encouraging signs of progress and health, but there were just as many bad days where she had repeated episodes of respiratory distress, or she wasn’t digesting the food sent through her feeding tube, or some other frightening development appeared to gnaw on the hope the family was clinging to. We all learned more than we ever wanted to know about fetal development in the womb and how that changes when the womb is no longer a part of the equation: how she may have to have surgery to close a blood vessel in her chest that normally closes after birth and that, if not closed, could stress her heart and hamper her breathing; how her intestines, forced to perform a task they weren’t ready for, could sustain lasting harm; how being on a respirator for the period required for her survival could cause chronic lung damage.
My niece spent her first three months in the hospital, and her parents continued to go through extreme emotional reversals as her condition changed daily. The first six weeks were in an incubator, where she spent her time growing, healing, and causing my sister, her husband, and the rest of the family regular heart attacks. She finally came home not long before her original due date, her former tangle of tubes and wires reduced to a single apnea monitor while she slept. One of my favorite pictures of her is one where you can’t see her at all – it shows her parents carrying her in her car seat through the exit of the NICU. I can’t imagine the immense sense of relief they must have felt.
Today, my niece is a year old – due to her prematurity, the developmental equivalent of a nine-month-old. (A preemie’s development is tracked at her adjusted age, which counts from her due date rather than her birth date, so she is right on target.) She is still tiny, even for that age, weighing in at a little over 12 pounds (about a third less than the average nine-month old girl). Her tiny features combine with a state of development normally well past her size to give her an impish look that I’m certain is an indicator of mischief to come.
Her parents are now joyfully watching her reach the same milestones as any healthy nine-month-old, and with no more apnea monitor – the last wires are gone.
She will have a few more trips to the doctor than a healthy full-term toddler, and she may someday require surgery for a congenital defect that doesn’t seem to bother her just now, but otherwise, she is a healthy, happy, normal baby. Medical science and some amazing, caring doctors and nurses really came through for her, and for us. And let’s face it, she’s a tough little peanut!
For a time, my sister didn’t want to share pictures online. She didn’t want the only image people had of her daughter to include tubes and wires. I’m having a horrible time bringing myself to share these images even now because I’m so used to being careful to respect her needs, and I could certainly understand where she was coming from. It was such a hard time for her. But then in November, which is National Prematurity Awareness Month (when the March of Dimes campaigns for help for preemies, their parents, and the facilities that care for them), she broke that silence to share a photographic timeline of her daughter’s journey on Facebook. The pictures I’ve used are some that she posted then, and she has given me permission to use them here. I’m so proud of her, and happy to see that she is healing, too. But for her, and for the rest of the family, August will always be our own very personal preemie awareness month.
If you’ve read this story – despite it being pretty far from my usual topics – thank you, and I hope it has inspired you to consider helping families going through this in some small way. NICU’s always need donations of blankets, hats, and even breast milk, since it is the only thing safe enough for a still-developing digestive system. Some even have volunteers who come in just to hold and interact with the older preemies to give them additional human contact. Many hospitals that handle micro-preemies like my niece (or a wide variety of other conditions requiring a longer stay) have a nearby hospitality house where the parents can stay (insurance often covers the cost of the room), and they always need donations of things like food, cleaners, paper products, coffee, and, of course, time. My sister stayed at one of these, and the volunteers were wonderful – as was the camaraderie that grew between families supporting each other through one of their toughest times. Support makes all the difference, in this and in most difficult situations. It really is friends, family, and community that help us through.
So Happy Birthday to a little girl who has put her family through so much, and who shows them every day that she was definitely worth all the trouble. You may have had a shaky start, but your journey is just beginning.