Life-changing

For this blog, I wanted to do at least one post on gastroschisis, which is the defect my son was born with. Instead of writing a post from scratch, I decided to put up something I wrote for a class I took last year. We were asked to write a paper on a moment that changed our lives. I decided to write about my son’s birth and how it led me to a career change. The piece was written before the birth of my daughter, so she’s not mentioned, though, obviously, her birth has also changed my life too. My hope is that perhaps a mother-to-be who has learned she is having a gastro baby will stumble upon this and get some comfort. When I was pregnant with my son, I had a hard time finding positive personal experiences with the defect, so I wanted to at least put my experience out there as a possible reassurance to another terrified mom. Here it is.

There is one moment in my life that I can think to that I know changed me to my core, and that is the birth of my first son. There are, I believe, few other events that can have such a profound impact on a person. In my case, my son’s birth was also a high and a low in my life. My husband and I decided to expand our family at the end of 2010. We’d been married a little over a year, but had been together more than five years. In March, I found out I was pregnant. Sadly, I learned the news after I’d already begun to miscarry. It was a devastating blow that made us determined to try again. I got pregnant again two months later and was excited but terrified I would lose this baby too. After all, statistics show women who have had miscarriages before may be slightly more likely to miscarry again. It also didn’t help that my mother-in-law told me she had several miscarriages before she had my husband. Weeks went by and I tried to eat well, avoid caffeine and over-the-counter medications. I avoided exercise out of fear the physical activity could trigger a miscarriage, even though my doctor said I could still exercise. Finally, at 12 weeks, we heard the baby’s heartbeat and even got to see a sonogram of him. At that point, it was too early to tell his gender, but we could see and hear he was okay. That came as a huge relief. I began to relax a little. The odds of miscarriage after 12 weeks, and after a heartbeat is detected, drop significantly. Still, there was always a fear in the back of my mind that I would lose this baby too. I took the first miscarriage very hard. I cried for weeks. The sight or children and pregnant women out in the world was often too much to bear, so I tried to avoid places where I might see them. I knew in my heart I couldn’t take another loss so severe. I tried to put the worry out of my head though. Stress is bad for babies, and I wanted to give my unborn child everything I could. So, I tried to stay positive. Then came our 20-week ultrasound. It was scheduled on my mom’s birthday, in October. I invited her and my dad to come along with me and my husband to see the baby. This was the appointment we would find out the gender. I secretly wanted a girl, and I was convinced that’s what I was carrying. It’s not that I didn’t like boys; I just didn’t think I’d be able to relate to a boy as easily or have as much fun with a boy. After all, you can’t dress little boys in dresses and bows!

The ultrasound technician began her work and pointed out the baby’s legs, feet, his little hands and fingers. She showed us his eyes and his nose. Then, she asked if we wanted to know the sex. We said yes. I waited, expecting to hear her say, “girl.” Instead, she excitedly said, “It’s a boy.” I remember feeling a little disappointed, but I was happy he was healthy. The technician wrapped up and sent us to an exam room so a midwife could finish the appointment. My parents headed home. My husband and I sat in the plain, tiny room, excitedly discussing colors for the nursery when we heard a knock on the door. The midwife entered. I hadn’t met her before. You see, the office I went to rotated staff so patients would know everyone ahead of the birth and no one would be a stranger when it came time to have the baby. The midwife introduced herself to us and then told us she needed to talk to us about a serious issue the ultrasound showed about the baby. Panic immediately flooded my body. My husband grasped my hand as the midwife told us our son had a hole in his stomach wall. “It’s called gastroschisis,” she told us. She explains that it’s a birth defect where the baby’s stomach wall doesn’t close completely in the first trimester. The result is that some of the baby’s intestines end up being on the outside of its body. In some cases, other organs end up on the outside as well. The midwife says the condition is serious and life-threatening to the baby. I immediately imagine the worst and burst into tears. I hate myself and the universe. I kept thinking it wasn’t fair that my first baby died and now my second would suffer the same fate, except this time, it would be much worse. The midwife told us that we would need to see a specialist to find out more about what the next step would be. She said she would schedule the appointment immediately. My husband and I left brokenhearted. We went to my parents’ house afterwards. We had originally planned to have dinner with them in celebration of learning the baby’s gender and my mother’s birthday. I waited in the car sobbing as my husband went in to explain to my parents what we had just learned. My parents came out and hugged me and told me it would be okay. We went inside the house and my dad, a journalist, began to press me about every detail of the conversation we had with the midwife. He immediately got on the computer and began to research the diagnosis. He found pictures and case studies and causes and statistics. I was numb to it all.

The next day, the doctor’s office called me and told me they had gotten me an appointment with the specialist for that afternoon. I called my husband to tell him and he left work early. We went to doctor’s office and waited anxiously in the waiting room. A nurse called us back. We learned they planned to do another ultrasound, this one more extensive. I lay on the table for 45 minutes, watching my helpless baby inside me, knowing he might not survive. I tried to pick out the gastroschisis in the images, but could not see it on my own. The technician did not say anything about it. After the scan, the doctor came in to get a look for himself. Then, he directed us to head back to his office to talk about options. There, he explained to us again what our son’s diagnosis was. He asked me questions about medication I took during the first trimester. He asked about environmental factors. I asked him what caused the defect. He said researchers still really don’t know what causes it. He explained it is a pretty rare defect, but has become more common in the last few decades. Then, he said something that I thought at the time was strange, but I came to recognize as being very true. He said, “As far as birth defects go, this is the one you want to have.” He then clarified, saying that this is a birth defect that is usually easily fixed and that typically has no lasting implications. He told us that the baby would be born with his intestines hanging outside his body. He explained the baby would be taken to the Neonatal Intensive Care Unit at the hospital directly after birth. Shortly after, he would be transported to Scottish Rite Children’s Hospital in Atlanta where doctors would prepare him for surgery. The doctor told us that there is always a risk in babies with birth defects that more defects may be present. He said some mothers choose to abort these babies and said that option was on the table, if I wanted it. He also said I could choose to have an amniocentesis to determine whether my son may have any other defects that couldn’t be seen on the ultrasound. He warned me the procedure, which is where doctors use a needle to extract amniotic fluid, carried a slight risk of inducing miscarriage. After already losing my first baby, I told him I would be keeping my son and that I did not want to risk a miscarriage. The doctor then explained some of the risks associated with gastroschisis babies. He explained they tend to be underweight, often because they aren’t able to absorb nutrients correctly with their bowels floating around in the amniotic fluid. He said they also have a higher risk of being stillborn or born premature. He added that the bowel’s exposure to the amniotic fluid could leave the intestines damaged, which, in some cases, lead to lifelong problems. He said I would have to have ultrasounds conducted every three weeks at his office to check the baby’s progress. I would also have to see my midwife every two weeks for checkups.

After the appointment, we were still terrified, but we began to feel better. The specialist gave us new hope that our son could still be okay. We went to the appointments and hoped with everything we had that our baby would be okay. And, amazingly, everything was okay. He kept growing at a good pace. The doctor couldn’t see any evidence of damage to his bowel. The baby was on track to be born, for the most part, healthy. By the third trimester, we were going to the specialist for ultrasounds every two weeks and the midwife every single week to have non-stress tests. For those, I had to be hooked up to a machine that measured the baby’s heart rate and movements. It also measured contractions. It was mainly done to ensure the baby wasn’t in distress in the womb. The baby did great on all of the tests. We scheduled a C-section for the 28^th of February in 2012. He wasn’t due until March 7^th, but the specialist thought it would be best if he were born a week early to reduce the risk of him being stillborn. I didn’t want the baby to be a Leap Year baby, so I chose the 28^th.

That morning was a strange one. My husband and I got up early. We had to be at the hospital at eight a.m. Our families were planning to meet us there. We left our house, our cats and our dogs behind. For the last time, we were leaving our home as a family of two. The next time we returned, we would be a family of three, though it would still be weeks before our son would be able to come home.

At 11:17 a.m., our son, Nicholas Ryan Pavlak, was born. I tried to look around the cluster of doctors and nurses that cowered over him to see his tiny face, but I couldn’t. My limbs were heavy and my head clouded by medication. But I could hear him cry out and tears streamed down my face as I realized he was okay. My baby, who I had worried so much about over the last nine months was here and he was okay. My husband stood up, trying to get his own glance at our son. They doctors swiftly wiped him off and placed his exposed intestines in a plastic bag. Then, they placed him in my husband’s arms for a brief moment. I saw my baby for the first time and it really was as if everything else stood still. It was truly love at first sight. I knew there was nothing I wouldn’t do to make that little boy happy and safe. I wanted desperately to hold him in my arms, but I couldn’t. I had to settle for holding his tiny hand for a fleeting moment. Then, the doctors rushed my baby off to the NICU. My husband left to be with him. I waited for what seemed like an eternity as doctors worked to put me back together.

When the nurses finally wheeled me into a hospital room, I was greeted by my family and my husband’s family. They carried gifts from the gift shop and balloons. My husband came to see me, armed with a phone and camera full of pictures of my sweet baby and our family members meeting him. He showed me pictures of all the things they had done since they left me. Everyone in the room had gotten spend time with my baby, except me. I broke down into tears. I wanted so badly to see him again and to hold him. The nurses assured me they would bring him by before he was transported 45 miles away to Scottish Rite. Here’s a picture of him shortly after he arrived there.

Nick with silo

I wish I could say that the things that happened up until this point were the hardest, but I don’t think that’s really true. The hardest part was the month Nicholas had to remain at Scottish Rite. That month was full of ups and downs. I was discharged from the hospital 48 hours after Nick’s birth. My husband took me straight to Scottish Rite to be with him. He was connected to several tubes and wires. His intestines were squished into a silo, hanging over his body. He looked so helpless. It wasn’t until he was four days old that I was allowed to hold him. When he was six days old, he underwent surgery to correct his defect. He came out of the surgery fine. All we had left to do was wait. The process was slow and frustrating. Every day for two weeks, doctors came around to check on him and check for signs that his bowels were functioning properly. He began to get fussy because he was hungry. He wasn’t able to breastfeed or drink from a bottle at all until he was a little over two weeks old because the milk could damage his system. For the first couple weeks of his life, all his nutrition came from a Pic line, inserted in his head. Once we were finally allowed to begin feeding him, it was a slow process. He could have only a very little at time. This was a very trying time for us because the doctors warned us Nick could backslide. That would mean they would see signs his bowels weren’t functioning properly. They warned us vomiting could be a sign of this. He only did this once, the day before we were supposed to bring him home. Fortunately, the mishap didn’t mean a longer stay. By the time he was nearly a month old, we were more than ready for Nick to come home, and it was finally time. I spent the next two months of my maternity leave getting to know my son. Some days, he would sleep on me for hours and I never felt more connected to someone, or more in love with someone.

As my maternity leave began to approach its end, I started to feel a lot of anxiety about returning to work. You see, I was working as a writer in broadcast television. I was on what’s called a 24/7 schedule that rotated every six months. That means I was required to work weekends, overnights, holidays, late nights, or early mornings. I began to stress a lot about all the time I would be missing with Nick and thinking about all of the precious moments I would never get back with him from the time he was in the hospital. I began to think about how sad I was as a child when my dad had to work Thanksgiving and Christmas and my birthday. I hated how he would frequently have to miss school events because he had to work. I began to realize I didn’t want that for my son. I wanted to be a mother who could guarantee she would be able to spend that time with her kids. I didn’t want to be someone whose who life revolved around work and whose schedule could be tolerable for a few months, and then unbearable a few months later. I came to the very difficult decision that it was time for a change.

That’s when I decided to go back to school to become a school media specialist. One of the reasons I chose the field is because I love research and I love reading and books. I wanted to do something positive with my life that would make a difference. Too often in my job as a broadcast news writer, I come away from work worn out just because all of the horrible things I saw on a daily basis, such as violent crimes, animal and child abuse, starvation and disease. I know working in a school will have its own challenges, but I believe the work I will be doing will be positive and will hopefully make a difference in kids’ lives. I want to help kids love books, reading and research every bit as much as I do, and, at the same time, I want the predictability and reliability that comes with a regular 9-to-5 type job.

After a lot of soul-searching, I made the very difficult decision to turn in my resignation in August 2012. A few weeks later, I started my master’s program at the University of West Georgia. I still freelance as a writer and copy editor, but only a day or two a week at most. The rest of the time, I get to be with my son. I still have some guilt and mixed feelings over the decision. I still wrestle with it a lot. I wonder sometimes if I made the right call, if having a bigger paycheck wouldn’t be better for Nick and our family. But then I think about all the moments I have gotten to spend with him because of my decision. Moments I could never put a price on. I can proudly say I was able to be there for all of my son’s firsts, such as his first steps, his first crawl and his first nightmare. (I want to note that this is not a slam on working moms or meant to make anyone feel guilty. I know everyone’s situation is different and that some moms are unable to stay home with their kids, while others know they would not be happy staying at home full time. I think we all do the best we can to love our kids and make them happy and that’s what’s important.)

So, that’s my story. Nick is 29 months old now. He’s had no lasting ill effects from the defect or the surgery. He has a tiny scar near his surgically-crafted belly button. He’s a bit of a picky eater these days, but I attribute that to him being in the terrible twos. I’m hopeful he will grow out of this stage where he says no to everything except hot dogs and Popsicles. Right now, the only way to get him to eat his green beans and broccoli is to tell him it’s my food and that he can’t have it. Vegetables are apparently never more appealing than when they belong to mommy.