My son, Sutton, is a very bright toddler with a great sense of self and an incredible personality. He loves to eat, and he enjoys all kinds of sports and physical activities – he just graduated from his white belt to his yellow belt in karate. In fact, if you saw him today, it would be hard to imagine that at one point, when he was first born, he weighed only two-and-a-half pounds. But it’s true.
The night Sutton came into the world, I was out at dinner with my husband and our dearest friends when I started hemorrhaging heavily. I was barely six months pregnant. Doctors tried to stop the bleeding to no avail, so ultimately, I was placed under anesthesia and had an emergency c-section. Sutton was born at 12:15 a.m. at 26 weeks gestation. He was a little more than three months premature.
There are many reasons why babies are born premature, but for me, Sutton’s early delivery was due to a fibroid tumor that had caused me to have a very complicated pregnancy with lots of bleeding episodes and ultimately led to a premature delivery. When Sutton was born, he immediately received respiratory support from a ventilator, but thankfully, he only had to be intubated for a few hours before transitioning to a CPAP (Continuous Positive Airway Pressure) machine. He also received a dose of surfactant, which was delivered through tubing placed in the lungs. Surfactant is a naturally occurring protein that keeps small air sacs in the lungs from collapsing. When a baby is born before 37 weeks gestation, their lungs cannot expand properly because they have not had a chance to fully develop in the womb. This treatment helps the lungs open up and helps the blood receive oxygen.
Sutton was constantly having apneatic episodes during which he would stop breathing, and then his heart rate would suddenly drop. Those were scary moments! They were incredibly common in the beginning of his NICU stay, but as weeks turned into months they became less frequent. He also had a feeding tube for quite a while until he learned to nurse from the breast and bottle. That took some time, and he could only take a very small amount (less than 1 milliliter) of breast milk in the beginning. He also had four blood transfusions. My husband Brad was able to donate the blood Sutton received each time and to this day, it amazes me to think about it. Donating blood is such a selfless act, and Brad was honored to do it.
Emotionally, the whole experience was very draining. I can remember almost everything about the NICU – the smell, the sounds and the feel of Sutton’s skin against my skin when we would do the skin-to-skin kangaroo care. But if you asked me about my birthday or food or the weather, I just don’t remember. I call that time in my life “the great sleepwalk.” It was hard to sleep and even eat, as every moment revolved around this tiny child’s survival. I was numb to everything outside of the NICU, but the moment I walked into the NICU I couldn’t get my coat off or wash my hands fast enough to get to my son and hold him.
Sutton spent 71 days in the NICU. It is estimated that basic neonatal care in the NICU is $3,500 per day. I’m going to round down and estimate that my son’s care was around $300,000. I remember seeing a bill for a portion of that — it was around $90,000. With our insurance covering most expenses, we came away largely unscathed financially speak, maybe paying about $200 once it was all said and done. To this day I don’t know how we managed to get away with paying so little, but it was a financial blessing for sure!
But that was still two-and-a-half months without my son at home in my arms. It’s a very odd feeling leaving the hospital with balloons and flowers and no baby. It was quiet. I remember Brad and I sat silent for a while once home. We didn’t really know what to do with ourselves. The NICU is the last place any parent thinks they’ll end up, so once there, you have no idea how to navigate it. For me, I never thought about the future during that time. My son fighting for his life demanded me to be present and engaged in the most hypersensitive way possible, so I just took it hour-by-hour and day-by-day. It was the only time in my life I wasn’t thinking two steps ahead.
I didn’t know much about prematurity when I gave birth to Sutton. Of course I had heard about it. I had nieces and nephews that spent a few days or even a week in the NICU, but I just didn’t get it, and I don’t think you can until it happens to you. Oh, but when it does, it’s like seeing for the first time. These blinders peel off and you see that it’s not only happening to you, but there are so many other parents experiencing prematurity as well. The experience thrusts you into a place of advocacy. We are now very involved with the March of Dimes and have participated the last three years in raising money for research and education initiatives through its annual March for Babies.
I also started a website and blog called “His Middle Name,” which shares our journey in hopes that it inspires others. Writing and sharing our story has really helped heal my heart, and it gives other preemie parents an opportunity to share their experiences with prematurity, post pictures of their miracle babies and even ask questions. Everyone has a voice, and “His Middle Name” gives preemie parents a forum in which they can share it with others who understand because they’ve been there.
Today, Sutton is thriving! He visited the doctor recently, and he’s doing beautifully, though he does struggle with a few things. Last spring he was diagnosed with Reactive Airway Disease (RAD), which is associated with allergies. It flares up a few times a year, and that’s when it gets scary for us. The last time he caught a cold he ended up in the ER, and Brad and I felt like we were right back to where we started when he was a newborn. We were checking him nightly, making sure he was breathing well and watching him more closely overall. It’s certainly something we hope he grows out of, but in the meantime we’re learning all we can and educating ourselves about it.
Sutton also has minor issues with food and textures. He is a really great eater, but he has a very sensitive gag reflex and doesn’t like certain soft or mushy textures. For example, he refuses to eat strawberries or ice cream, but he loves bananas, yogurt and applesauce. He also loves lean meat, all vegetables and some fruit, though, so as long as he is eating nutritious, wholesome food, then we (along with his doctor) are very happy!
For a NICU grad, Sutton is doing so very well, and he surprises us daily. Of course, we don’t want any other parents to have to go through what we went through, but if there is one thing I want other parents to know about preemie babies, it’s this: They are incredibly strong! What premies lack in size, they truly make up for in spirit and moxie, and they are such little fighters!
Everyone has a story to tell. What’s yours? If you have an interesting parenting story that you’d like to share with our readers, email [email protected], subject line: MY STORY.