Today was our son Rawley’s original due date, but he is now 11 weeks and 1 day old. Rawley came home from the NICU on July 24th, 62 days after his premature birth on May 23rd.
Our family collectively spent almost 4 months at the hospital beginning when my water broke April 3rd. Our journey has been full of both trials and blessings; life as a NICU parent is both excruciating and joyous. I coped day-to-day for 4 long months by making an effort to remember the following:
- First And Foremost, I Married The Right Man. To say the NICU is an emotional roller coaster is an understatement. Without the right partner, and a solid marriage, it can tear you apart. Nathan was an absolute rock, even-keeled, patient, and positive. We both were exhausted physically and emotionally pretty much all the time; we both missed Rawley all the time when we aren’t there. But Nathan tolerated all of this much better than I did, which allowed me to draw most of my strength from him. I’ve never been more thankful for him, or had more respect for him. If he hadn’t done this for us, I can’t imagine what would have happened. Single readers, take note: you never know what life will toss at you, so be sure to choose a partner that has the moral fiber to implement “in sickness and in health.” And, make sure you can do the same for someone else.
- I Cannot Let Fear Control Me As A Parent. While on bed rest, I had to work really hard not to let fear about what might happen to our baby control my thoughts on a daily basis. When I mentioned this struggle to my friend Courtney, she said, “Get used it. That feeling never goes away.” It dawned on me then how true that is. It’s not like after Rawley came home, that he was suddenly safe. The worry I feel as a parent is pretty much a permanent condition from here on out. Parenthood isn’t necessarily easiernow that Rawley is home, just different. Understanding this, then and now, helps me achieve some peace of mind. Throughout this experience, I’ve realized that I need to learn to shun fear and trust that Rawley will be okay.
- Pregnancy Is Hard For Everyone. This awareness came about belatedly, after many days of not being able to see past my own nose. Even before I was hospitalized, I resented women that complained about minor pregnancy ailments because of my complications. Once hospitalized, I had my share of full-blown pity parties, especially in the first two weeks after Rawley was born. On top of the difficulty of my pregnancy, I experienced the postpartum-from-hell. I had jaw clicks and a deep cough from being intubated at delivery; my legs swelled so badly from being pumped full of magnesium and then general anesthetic that the term “cankles” is less appropriate than “elephantitis;” I had night sweats that required three clothing changes; I had flu-like symptoms when my milk came in; I cried at the drop of a hat; I had above average pain from a classical C-section. (My theory is that God knew this would be my only pregnancy, so he allowed me to experience every possible symptom so I wouldn’t miss out on anything.) People told me “you need to rest” to which I responded in exasperation “I can’t, I have to walk all over the hospital to see my baby every day!” The more I talked to other parents, though, the more I came to understand that pregnancy, delivery, and postpartum are rarely, if ever, easy. And, ironically, there is probably someone out there that had it even worse that will resent me for complaining.
- Ditto For Parenthood. Nathan and I aren’t special; what happened to us isn’t even that unusual. We’ve heard from dozens of families that went through similar NICU experiences. We saw children that were much worse off than Rawley in the same NICU. The truth is, every family will eventually deal with injury, accident, illness, or death. All any of us can do is take one day at a time. This point has been squarely driven home over and over in recent months. One of my nurses told me about when she caught her new husband sexually abusing her children; another nurse carried her daughter for 32 weeks, knowing she’d only survive for a few hours after birth. One of Rawley’s nurses lost a son at 32. My college friend Julie and her 7-year old son Timmy died in a car accident in Paraguay. Two good friends were on hospital bed rest for placenta previa at the same time as me; one friend lost her husband while pregnant with her first child at age 23; one pumped in vain for six months while doctors attempted to determine why her son was unable to tolerate her breast milk; another lost a son at 38 weeks. The woman I was introduced to on Twitter ruptured very early, just like me, but unlike me, lost her twins two weeks later when she went into labor too early. The list goes on. Life is not easy. Parenting is full of risk. Raising a child can be heart breaking at times, even – or especially – when it only lasts a matter of weeks and you never really get to know your child. Nathan and I thank God every day that we got to meet our son and get to know him despite such incredibly difficult odds. Nathan told me one day, “the good thing about what we’ve been through is that I don’t think we will take anything for granted.” So true.
- This Too Shall Pass. Shortly before my water broke, I read The Happiness Project, by Gretchen Rubin. In it, one of her sage guiding principles for happiness is remembering that “the days are long but the years are short.” This kept running through my head throughout my bed rest and NICU experience and helped me stay positive on a day-to-day basis. I knew once it was all behind us, it wouldn’t seem as bad, and that helped me trudge on. In addition to Gretchen’s pearl, one of the best pieces of advice I got was to consider Rawley’s time in the NICU as part of my pregnancy, since Rawley was still supposed to be inside me. This was profound. It helped alleviate the feeling that we were “missing out” on time with Rawley while he was in the NICU. It rang true because preemies generally go home around the time of their original due date, and at that time, they are developmentally similar to typical newborns.
- Every Day is Precious, Even The Hard Ones. When my water broke, I felt cheated out of a normal pregnancy. When I had to go under general anesthetic and Rawley went to the NICU, I felt cheated out of a normal birth experience. When I learned that Rawley would come home on oxygen, I felt cheated out of a normal newborn experience. And so on. I kept thinking, “everything will be so much better as soon as ____ is over.” At some point, though, I had to let this all go. I had to accept that bed rest, NICU, and home medical care are part of our family’s story, like it or not. Those days in the hospital count as part of our fleeting time raising our son. These current days spent maneuvering around oxygen tanks and being limited to two rooms in the house count as Rawley’s first days at home. He is already almost 3 months old! How quickly time flies. I have to remind myself not to wish the days away.
- Wallowing In Guilt Doesn’t Accomplish Anything. At times, the amount of guilt I felt was almost too much to bear. I was overwhelmed by the feeling that I was responsible for Rawley’s suffering (and Nathan’s, by default). Rawley he was born too early because of my health issues. Additionally, I felt anxious whenever we weren’t at the NICU with him. I worried that Rawley was being neglected when we weren’t there, that he didn’t get adequate cuddle time. After I was discharged, I cried right through my first time eating out at a restaurant; it was hard to enjoy doing anything social. Paradoxically, being at the NICU was emotionally draining; every little monitor bleep bred anxiety; the lack of privacy drove me crazy; even the chairs were uncomfortable. Consequently, it was hard for us to be at Rawley’s bedside for more than a few hours at a time. Looking back, I know the only way I worked through this particular area was by the grace of God and with the support of Nathan, friends, and hospital staff, who gave me permission to be away from the hospital and take care of myself. For parents without such a support system, I can imagine how marriages would crumble and mental health break down.
- Nathan and I Will Always Be Rawley’s Greatest Advocates. There is so much passivity in medicine, such an inclination to be formulaic, that if no one ever speaks up, things proceed along a prescribed path even if that isn’t the best, or even the only, path for a particular child. The constant staffing rotations (typical of a teaching institution like OU Children’s Hospital) were not just frustrating but at times actually caused Rawley to take steps backwards. The longer Rawley was in the NICU, the more it became apparent that no one knew as much about him or his short life as Nathan and I did. Our daily presence was vital to his progress. So, I became the squeaky wheel. I got involved. I asked for room changes, for medical intervention, for explanations, for whatever we needed. Usually, requests were granted, even though the doctoral tone was often a bit condescending. I brought in clothes and linens for Rawley, even though the nurses told me I didn’t have to do so. I actually liked doing his laundry at home; it made me feel more connected and involved when I was away from him. I brought in toys. I carried large bags so I could smuggle in drinks and snacks to make sure I got adequate hydration and nutrition since I was breast pumping.
- I Was Prepared For This By Everything That Came Before. My own life experience fortified me during this trial; this awareness was a calming force. Having travelled extensively, I know what real suffering is, and that knowledge provided me strength and perspective. Not coincidentally, I believe, I worked from home for a year and a half before my water broke. Therefore, I was used to spending lots of time alone, and that helped me survive the long quiet hours on hospital bed rest. I studied, worked, and advocated in the fields of health care and developmental disabilities for years, which helped me understand everything that was going on. I could go on. But suffice it to say, I don’t believe any of this was a coincidence.
- I Am Loved. And so is Nathan, and so is Rawley. Hell, even our dog and cat are loved. (Well, at least our dog.) On the darkest and loneliest days, when no flowers, cards, or gifts arrived, when my phone didn’t ring, and no visitors came, I relied on this knowledge to carry me through. I looked at the flowers that already filled my room, and the cards taped on the wall. I read text messages, Facebook, Instagram, and blog comments. I prayed.
I have been simply…amazed…at how many people have been following Rawley’s story. Hundreds…even thousands. It’s mind-boggling. The kindness and generosity of not just good friends, but total strangers, that sent cards, baby gifts, meals, gift cards, prayer, and well wishes has been humbling. It made a difference. No, it made the difference. Thank you feels inadequate, but we’ve tried to say it and write it, over and over. Know that you are a part of this miracle. And…on the flip side, to those of you that have been annoyed by how much I’ve talked about it, or thought I posted too many pictures on Facebook, well, sorry. I am a photographer, so I can’t promise that I’ll stop anytime soon.
Rawley is most certainly a miracle. Every medical provider that’s encountered him along the way would agree. But the truth is, every life is a miracle. No child should be taken for granted. Every child should be welcomed with as much joy, and prayer, and attention as Rawley was. That is my prayer for our community and for the world.