What I want you to know about parenting a preemie

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here. Today’s guest posts is by Lindsay.

What I want you to know is that having a preemie is really, really scary. When I was little, I had a Cabbage Patch Kid that was a “preemie.” His name was Christopher and he was chubby and pink and came free of scars. Real preemies are rarely chubby and most of them come with lots of scars. Not that I had any reason to think about any of that when I was eight. I didn’t even think about that twenty two years later when we found out we were going to have our first baby. Why on earth would I? Everything was going ducky until my appointment at 25 weeks. I was diagnosed with severe preeclampsia and was sent straight home to bed for the weekend. By Monday morning, I was on hospital bed rest for the remainder of the pregnancy, which I was deluded enough to believe would still be full term. Four days later my kidneys failed and I was given an emergency c section. My son was born at 26 weeks weighing 1 pound, 9 ounces. The emotions that follow are gut wrenching to revisit, even three years later. There was anger, bottomless sadness, fear for my son, fear that my husband would blame me and insurmountable anxiety. Every second of every day. All at once.

My son’s early days in the NICU were like a nightmare that never ended. When he was born, he was amazingly breathing on his own. I was told that was a good thing. But I was so out of it, I couldn’t even bring myself to acknowledge he truly existed outside of me, let alone that he was doing relatively ok, considering. The thing that snapped me back into reality was when his neonatologist came into my room and sat down to talk. He had suffered a pulmonary hemorrhage and stopped breathing. They were able to revive him (“like, from the dead?” I remember thinking), but he was put on a respirator and might not make it through the night and we should be prepared, whatever that means. I don’t remember much from that night aside from refusing a sleep aid the nurses were forcing on me and laying in the bed with my husband, promising to each other that no matter what happened, we’d get through it together. Our son did indeed survive the hemorrhage. But his outcome was still very unknown. We were warned that babies as sick/premature as he was could have any number of life long problems including Cerebral Palsy. This was my biggest fear.

Despite this rocky beginning, slowly, slowly, he got stronger. But it was a minute by minute growth. One day he’d have a great success (like taking milk the first time intravenously or his first poop which caused a round of applause throughout the NICU), then the next day he’d have any number of setbacks. After a few weeks, about a dozen blood transfusions, two different ventilators, and heart surgery, he was finally strong enough to be held by me. It was the most amazing moment of my life. Nothing like what I imagined the first time to be, though. He had tubes and wires that beeped and whooshed everywhere and I couldn’t move him much, once I had him in place. But his nurses were wonderful and helped me to forget that his thin skin was still see-through and that he was so sick and little, he still couldn’t breathe on his own. I even managed to forget we were in the loud, scary NICU for a few fleeting moments. I finally felt like a really mom and not so much a dairy cow, pumping milk for an all but unknown recipient.

Even though he was getting stronger and slowly gaining health, I still battled intense demons. Why had this happened to us? We didn’t deserve it. How was I going to care for a kid with disabilities? I never blamed myself, though. I read up on preeclampsia and talked to my doctors and understood that it was predetermined very early in the pregnancy. So I was saved that torture. But my knowledge didn’t stop me from losing all sense of couth and control when a woman I worked with told me it was my fault because I over exerted myself while we were moving into our new house a few weeks earlier. Let’s just say, she’s lucky her jugular is still in place. This brings me to the next hardest part of having a preemie in the NICU. People say really stupid things. That was the only mean spirited thing anyone every said to me. But it wasn’t the most annoying. The thing that bothered me (and my husband) the most was when people would say oh my <fill in the blank distant relative, friend, hair dresser, babysitter, co-worker> had a preemie. It would go something like this, “Oh, my cousin had a preemie. She was born two weeks early and spent three days in the NICU. It was soooooo scary.” I know they were just trying to help. But walking away was all I could do to keep my sanity. I may have looked like I was handling things very well on the outside. But on the inside I was still a ball of raw nerves. I’m sure I made a lot of friends during those dark days (ahem, sarcasm). In part, it was my own fault. I opened myself up to those conversations when I went back to work as soon as I was healed. But I needed some contact with the outside world and I was desperate to keep my maternity leave for when our son came home. So I went into the office for a few hours every morning before heading to the NICU for the day to help clear my head. But this is not recommended if you’re trying to make friends or impress people. Because looking back, I suspect I was an incredible bitch.

As the months rolled on, our routine became much more bearable. Enjoyable, even. Doctors started saying things like “when he comes home…” which doesn’t seem like much, but it was like angels singing to me. It meant they were certain he would be coming home. Tests revealed he didn’t suffer bad brain injuries from his hemorrhage so I wasn’t as scared of Cerebral Palsy. He was off of the ventilator and breathing on his own with assistance from CPAP and I could even nurse him! Things were really looking up. Before we knew it, his doctors and nurses were talking about his amazing health. They rarely saw someone so sick make such an amazing recovery. These conversations healed my aching heart more than any medicine could ever do and I reveled in them.

Then, July 2nd, 2009, 105 days after he was born, our son Walt came home. Poof. Just like that, he was ours. Not the doctors’ or nurses’, but ours. The NICU had a cake and a little farewell party for us and sent us on our way. I had little fear that he’d go and do something stupid like stop breathing (apnea in preemies is very common). Maybe it was foolish, but I had total faith in my son’s strength and determination. He was home to stay. And he thrived at home. But we soon found out that having him home was almost as hard as having him in the NICU. Because of his time on the respirator, he had lung disease. Even a simple cold could have landed him back in the PICU on a respirator. So we were on lock down. We didn’t take him anywhere for months and visits from family were few and far between. Many relatives took great offense to our almost 9 month solitude but it was what Walt needed to thrive, so that’s what we gave him. Then, in the spring of 2010, right around his 1st birthday, we broke the lockdown. I could finally take my baby to family functions and parks and the super market! Life was finally becoming what I imagined having a family to be like.

The next year was full of check ups and physical therapy… but nothing was stopping him now. The kid was and still is a machine. We’re unbelievably lucky that his outcome was so good. I know many preemies that haven’t faired as well and I’m at a loss as to how we’re one of the lucky ones. But I’m endlessly grateful for every break we got. Having a micro-preemie is very difficult and full of raw emotions. Some people have much longer, sorrowful stories than we do and my heart goes out to them. Some people have to face losing their babies, something I can’t imagine ever recovering from. Some people have to cope with conditions like cerebral palsy, failure to thrive and blindness. Autism, learning disabilities and asthma are a big risk for micro-preemies and I don’t know a single preemie mother who isn’t secretly (or not so secretly) on constant vigil for the first sign of a problem. Because that’s what we do. Especially we first time moms. We’re conditioned to the worst case scenario. Maybe I’m misspeaking on behalf of the majority of us. But judging by the preemie mother I know, I don’t think so. Your baby coughs and you pat him on the back. Our babies cough and we rush to the pediatrician for an RSV test. A woman walks up to your baby in the stroller to coo and you show him off proudly. Our baby is approached by the same woman and we hide them and shuffle off in the other direction, in fear of germs. And that’s just fine because that’s what we have to do to help our babies heal. Part of me hated being on constant vigil. The other part thrived on it. Keeping Walt safe was my reason for waking. I threw myself into it to help mourn my lost pregnancy. That may seem like a silly thing to mourn because here I stand with a healthy toddler, so who cares about the rest? I do. I clamp up every time a friend or someone at the playground tries to commiserate about birthing classes or stretch marks or how the baby kicked their ribs for four months… I never had any of that. So I mourned – and still do.

My son has his NICU scars from PICC lines and heart surgery but I don’t teach him that they’re because he was sick and weak. I teach him they’re symbols that he’s a fighter – a strong little dude with the heart of a warrior who can overcome any obstacle. And that makes me grateful for every second of our journey together.

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