By Gabrielle. Anthony Burrill’s upbeat artwork is lovely, isn’t it?
Steered by Flannery O’Connor’s own raison d’être — “I write to discover what I know.” — Carrie Willard’s writing normally centers around exactly that, which means her topics range from minimalism, healthy food and wellness, homeschooling, the science of happiness, frugality, and the economics of a large family. Large family meaning seven children, by the way.
It is the story of her seventh that brings her here with us today. She had stopped writing about parenting for the most part until she gave birth to a 27-week preemie. I’ll let her tell you the rest of the story. It’s pretty remarkable. Welcome, Carrie!
This morning I woke up with a very small, very blonde, blue-eyed imp crawling over me and babbling all the new consonants he’s learning. It felt very normal. I took a moment to appreciate it, because nothing about my pregnancy, his birth, or the first few months of his life were normal. He is my seventh child but my first preemie, meaning he feels like my first baby.
Because with a preemie, everything is different.
We had decided our family was complete and my husband and I were being very, very careful — so we were completely shocked when I began feeling the familiar, tell-tale signs, and a pregnancy test showed a BFP.
A few weeks later, as I was coming to terms with the fact that we were adding to our family again, I began feeling hard cramps, something I had never experienced before. When the bleeding started, I was horrified. I had been so lucky; I had never had a miscarriage. I had given birth to six beautiful, perfect babies. I called my husband and told him to come home, as I was losing the baby. I called my home-birth midwives, who had attended several of my births and who I hadn’t even had time to see yet, and told them what was happening. They told me what my options were, and I opted to stay home and let things unfold naturally. I headed to bed and waited for the inevitable.
Only it never happened.
A few days passed, with more cramping and bleeding. Every time I went to the bathroom I was terrified that something would fall out of me into the toilet, that I wouldn’t recognize it as a very young fetus, and accidentally flush it. I wondered if I had caused this somehow with my strong feelings at the beginning of the pregnancy. I searched my memory. Was it the horseback riding on that camping trip a few weeks ago that did this? My oldest son stayed by my bedside playing his guitar for me, strumming a song he wrote for me and the sibling we thought he would never meet.
I went to the doctor to get an ultrasound, trying to figure out what was going on. I read that a natural miscarriage could take weeks to complete. Was this what was happening? I just wanted it to be over with, to grieve and get on with my life. I couldn’t have been more shocked when I saw a tiny baby with an obviously beating heart on it on the ultrasound screen. How could this be possible? How could such a young fetus survive this?
The doctor had no real answers for me, but his face was grave. He told me that pregnancies involving bleeding only ended well about half the time. He said to avoid too much activity (which was going to be interesting, considering I had six children already), and to observe strict pelvic rest.
The diagnosis was subchorionic hemorrhage (or hematoma), a fairly common pregnancy complication that causes blood to collect between the uterine wall and the chorionic membrane, which may then may leak through the cervix. Subchorionic hematoma may strip the developing placenta away from its attachment site, causing miscarriage, or placenta previa later on. Or, as in my case, a weakening of the membranes that hold the amniotic fluid intact.
This scenario, with bleeding, leaking of amniotic fluid, and panic, followed by a completely normal looking ultrasound, repeated itself several times, and yet my baby continued to grow and develop normally.
At about 18 weeks gestation, I had a particularly rough night with intense cramping, bleeding, and leaking that kept me awake. I wondered, Is this it? My family was on a camping trip, so we rushed home. But once again, the baby held on.
The only way I could cope with this emotional roller coaster was to avoid getting attached to my growing baby. I went numb, just going on with my routine, mostly forgetting I was pregnant, which is easy to do when you have several other children to care for and little time to think.
Three weeks later, at 21 weeks of pregnancy, I awoke in the middle of the night soaked with amniotic fluid. My water had broken.
I cleaned up, got dressed, put on makeup, and kissed my husband goodbye. I told him to stay with the kids, everything was okay, but that I was going to the hospital.
Once again, I found myself crying with relief and fear when I saw a live, wiggly, perfectly formed baby on the ultrasound screen. The doctors told me there was nothing they could do at this point. I was still at least three weeks away from viability, the point that medical teams will take action to save the life of a premature infant. They told me that they had no way of knowing whether my child could survive. The most likely outcome was that my water breaking would trigger labor within 24 hours, my worst nightmare at this point.
The perinatologist on staff at the hospital encouraged me to terminate, citing statistics about premature babies. He told me that even if my baby survived, he was likely to be deaf, blind, have Cerebral Palsy or other severe birth defects. He told me my own life was in danger. “I have five kids and love them to death, but there’s not one I would trade for my wife.”
I left the hospital not knowing how to feel or what to do, but knowing that I could never terminate my pregnancy as long as my baby’s heart was still beating. They recommended bed rest, though one doctor was honest enough to admit there was no evidence it worked, something I later researched and found to be true.
I got online and spent hours every day researching Preterm Premature Rupture of Membranes (PPROM), finding that there were several communities online full of women who had experienced this. I read their stories of both loss and premature births. I analyzed statistics. I discovered that, when my water broke at 21 weeks, my baby had less than a one percent chance of surviving. One percent!
Every day that I could stay pregnant increased his chances of survival. My goal was to make it to 24 weeks. Every day was a triumph as I managed to stay pregnant. Every night I prayed that I would wake up pregnant, and every morning I rejoiced that my baby had another day to grow in my womb.
I began taking a supplement regime that had been shown to improve outcomes for PPROM moms. I ate a LOT of food. I don’t know exactly why, but even though I was on bed rest, my appetite was monstrous. I drank over a gallon of water a day in an attempt to stay hydrated. Because, thankfully, the body constantly creates new amniotic fluid during pregnancy, mostly consisting of baby urine in the final months. I leaked constantly. It was terrifying to feel.
Being pregnant without amniotic fluid felt bizarre. The baby, although tiny, could hurt me with his movements because there was nothing to cushion those little elbows and knees from my organs. Yet I was thankful for every movement, because movement meant life. I would become terrified if I didn’t feel my baby move. I would awake in the mornings with a cramp in my wrist, due to the fact that I was subconsciously holding my hand pressed against my belly all night long, feeling for him.
I began seeing a high risk perinatologist weekly for high-level ultrasounds. Among other things, they looked for fluid in baby’s bladder. If it was there, it meant he was doing his job: finding small pockets of amniotic fluid and swallowing it, then peeing it out. This was a good sign.
When I was still pregnant at 24 weeks, I went back to the hospital for steroids, for which I am so grateful. Steroids help force preemie lungs to develop faster and are probably responsible for saving my son’s life. I received two rounds as an outpatient.
I told my story to everyone who would listen. I was still pregnant! I felt confident that I could handle whatever happened next. My baby was alive, and that was all that mattered. Meanwhile, I kept homeschooling the older kids — they would bring their books into my bedroom — and running my household as best I could from my bed. My husband came home from work every night to a messy house and warmed dinner for the family. Thankfully, my family and many of my friends were supplying us with dinners.
At 26 weeks, I checked myself into the hospital to stay until I went into labor. Since this was my seventh child, he was tiny, and I had no fluid, my labor would likely progress very fast. Still, the decision to go to the hospital was not easy. I was weighing life and death matters — my son’s (and my) survival — against the very real, practical difficulties my family would face in my absence. My two oldest sons became the caretakers for their young siblings.
I stayed in hospital for nine days, one of the most difficult periods of my life. Time seemed to stop. I missed my two-year old so intensely it felt like a very real pain in my chest. My husband brought the kids to see me, nearly a two-hour round trip, each night so I could deal with it. The weeks I spent on bed rest were exhausting, depressing, and difficult. I mostly distracted myself with Netflix, finding that even reading was too mentally taxing.
After I had been in the hospital for a week, I began experiencing what felt like early labor, and the bleeding returned. The placenta was beginning to separate from my uterus, a potentially life-threatening complication for both me and baby. As baby was so small that a vaginal delivery may injure him, my doctor performed a C-section, which surprisingly was no less painful to me than my non-medicated vaginal births.
My son Josiah — meaning “Jehovah God has strengthened” — was born weighing two pounds, five ounces, large for a baby of 27 weeks gestation. Perhaps all that extra food helped?! He had to be intubated briefly, but later on went to a C-PAP to keep his lungs inflated. He had to learn how to regulate his body temperature, how to breathe, and how to eat. He was the size of a sweet potato with tiny arms and legs. His diaper was folded down to the size of a debit card.
I both loved him and was terrified of him.
If I thought having a high-risk pregnancy with multiple threatened miscarriages was difficult, it was a walk in the park in comparison to the next three months my son spent in the NICU. Every day I rushed through my morning routine with my kids, then left them behind to go visit my newborn infant who lay in a plastic incubator, what I called my heart-shaped box, since my heart lay in it as well. In the beginning I had to ask permission to touch him or hold him, an ordeal that took nearly 45 minutes due to all the cords and wires coming out of his body. I pumped my breastmilk every three hours around the clock, something I found horribly difficult and had no experience with before despite years breastfeeding my other children.
Every emotion you can name — from intense love and protectiveness to anger, rage, depression, despair, sadness, and grief — I experienced them all as I watched my son grow outside my womb with the aid of intensive medical care. The NICU nurses became my entire social life, my therapists, my healers, my family. I had no time or energy for anyone else. Every day that I placed my son back into his incubator (and later, crib), I felt my heart splinter into a million pieces. And every day I put things back together to do it all over again.
While I felt intense feelings of love and protectiveness for my baby, he was also a trigger. He was the reminder of intense emotional pain, grief, and anxiety. I couldn’t feel happy despite the fact that everyone, including his doctors, kept telling me he was doing so well. I was so lost in my pain, it felt like drowning. My emotions threatened to overcome me and I was constantly treading water, beating them back down. I managed to keep myself together when I was with my children at home, but as soon as I got in the car to begin the commute to the hospital, everything would spill out. I would heave and cry great, ugly sobs. I began seeing a therapist.
All I wanted in the world during this time was to take my baby home, to hold him outside so the sun could shine on his face, and I thought that after my son came home from the hospital, things would be better for me, but that wasn’t exactly true. The NICU was safety, and despite my grief at having to be separated from my baby, I experienced sheer terror once he was home. Nothing about mothering a preemie felt familiar to me. It wasn’t just that he was attached to a heart monitor (that, in the early days, went off every few minutes all night long, rendering me a zombie during the day), it was that preemies just don’t act like term babies. Due to their immaturity, they make strange noises, have no active/alert phase, and lack normal feeding cues. I had spent the last 17 years breastfeeding my babies, six of those years as a La Leche League leader, but breastfeeding this baby was a nightmare. I struggled with low milk supply for the first time in my mothering life. It took me several months before anything began to feel normal about mothering this child.
My son is now 14 months old, 11 months adjusted. He laughs when he burps, eats two egg yolks for breakfast, has his big brother wrapped around his finger, and can pull himself up to cruise around the sofa. Yet he only weighs 15 pounds, barely fills out his nine-month size onesies, doesn’t put food (or anything else) in his mouth, doesn’t say mama or dada yet.
On the one hand, my family has been extremely fortunate. None of the dire predictions of that first perinatologist have come true. My son’s NICU experience was uneventful. He had no brain bleeds, no surgeries, and his vision and hearing are fine. He has no long-term issues from his prematurity that we can tell.
Yet I wonder if the stress and worry of mothering a preemie ever really goes away. My baby was back in the hospital twice in his first year, required a winter-long quarantine, two surgical procedures, has struggled with hypotonia (low muscle tone) and failure to thrive, and I’ve never spent so much time in doctors’ offices.
I’m reminded of a scene from the movie Inside Out. When Bing Bong, Riley’s imaginary friend, sacrifices himself to help Joy get out of the memory dump, he jumps out of the wagon so it’s light enough to escape. This is a bit what it has felt like healing from my son’s traumatic start.
I have had to sacrifice my imaginary ideal pregnancy, birth, and postpartum experience. The one that begins with a normal, annoying but uneventful pregnancy, and ends with a chubby, wet infant in my arms, at home, moments after his delivery, where he immediately suckles on my breast and it’s smooth sailing from there — the one I had with my other babies.
But this is what love does. Love makes us willing to sacrifice ourselves for our beloved. Love also means sometimes grieving the fact that things aren’t perfect.
My story isn’t over. While most of the intense sadness and anger have subsided, I still have remnants of post-traumatic stress that rears its ugly head from time to time. I don’t think this experience has left me stronger, it’s just made me different. It’s changed me. I cry more often. I also no longer get irritated at my kids or husband when they leave messes around the house. I can put things in perspective better. I have drawn closer to my children and appreciate my husband more. My son’s premature birth gave me the strength to confront people who were hurting me, and to erect proper boundaries.
To quote another mother of a preemie, “Once you’ve held a miracle in your arms, nothing is ever the same again.”
I love your journey so much, Carrie. It’s joy and pain and a measured hope and a new definition of important and meaningless. It’s life, isn’t it?
Post-traumatic stress is quite the sneaky one, surprising us with bursts of intense, inexplicable emotions when we least expect them. Have any of you experienced this? It really resonated when Carrie says this entire ordeal hasn’t left her stronger — it’s just made her different. It’s a unique way of looking at it, and for some reason that thought made me feel better about things. And I’m really not sure why, even!