Heidi
Mom to Avery Rose, Everett James and Elliot William
Miscarried January 19, 2016, August 8, 2016 and Born May 29, 2017 and Died June 3, 2017
Aurora, Colorado
I completely believed we’d bring Elliot home.
I think that’s what strikes me now, on his due date, a little over two months after losing him. There is this stark contrast between what I fully believed and expected would happen, and what has actually happened. And my mind and heart cannot fully accept that Elliot will never be coming home.
This is not only the story about losing my Elliot, but about losing my faith. I tried at first to write this story without the faith aspect, but it’s impossible. I am grieving and grappling with two losses: the loss of my perfect baby boy, and the loss of the God I thought would protect him.
I will never have Elliot back in this life. But I have whispers of hope in my heart that someday faith will be a part of me again. Perhaps it is still, manifested in the anger and disappointment and confusion I feel toward God. I just don’t understand. And I can’t tell the real version of my story without sharing everything. Perhaps when I share this story in a year or five years or ten years, there will be something beautiful to share about how God met me here and healed me. But today, only two months later, there is just love and loss.
At the end of 2015, my second daughter was almost a year and a half, and my husband at I had the should-we-try-for-a-third-baby talk. Our girls were just 19 months apart, and we knew the challenges of life with a baby. But we also knew the joy and love of life with a baby, and we felt so open to welcoming a third biological child into our lives.
We prayed, and decided to let God decide. We’d not “not try” for 6 months, and if we weren’t pregnant after that amount of time, we’d move toward adoption, which we’d always felt called to.
It all seemed so straightforward after two healthy pregnancies resulting in two healthy children: get pregnant and have a baby, or not get pregnant. Though miscarriage happens to so many women, it truly did not cross my mind it could happen to me.
We got pregnant the first month we didn’t use birth control. We were surprised but overjoyed. The baby was due August 21, 2016, just a little more than two years behind our youngest.
I went in for my 8-week prenatal appointment and saw that beautiful heartbeat that brings every expectant mother joy and peace. My baby was growing well. Everything looked perfect. I remember my nurse practitioner asking questions about my health previous to getting pregnant. I told her I’d had spotting between periods and extra long periods since getting my period back about six months earlier. She said, “Oh, usually that makes it harder to get pregnant. But I guess not for you!” I did not worry one bit that I could have reproductive issues that could affect my pregnancies.
One week after that appointment, I saw bright red blood after exercising. It freaked me out, but there wasn’t a lot. I knew a little bleeding could happen, so I chose to move on with my day and make a doctor’s appointment later. I went to my tutoring job, and in the middle of tutoring, I felt heavier bleeding on my pad. I excused myself to the bathroom, and as I was walking to the bathroom, felt the blood completely overflow my pad and pour down my legs. A friend drove me home, where my husband was waiting. He made an appointment to take me to the OB. I remember thinking, “What’s the point? I know this is a miscarriage.” But we went anyway.
When the nurse practitioner put the ultrasound wand in me and we saw my baby’s heart still beating, I sobbed. God had granted us a miracle! How could the baby still be there after losing SO much blood?
The nurse said I had a subchorionic hemorrhage (or hematoma), that this could happen and usually the pregnancy would continue like normal, and the baby would be just fine. Oh how my soul rejoiced! My husband and I went home on cloud nine. He went to work the next morning, and I awoke with blissful peace after such a scare.
But as soon as I got out of bed, the bleeding increased. Clots started falling out of me. I tried to remain calm, as the nurse said there could be more bleeding. But eventually I knew it was more than I should be bleeding. When I passed something that looked more like tissue than blood, I feared the worst, but prayed God would grant me another miracle and we’d see baby’s heartbeat again. My husband came home and took me to the Emergency Room.
And in that cold, unfeeling room on January 19, 2016, the ultrasound technician scanned me. I tried to read her face. She didn’t say anything. Finally I had to ask, “Do you see anything?” And she replied, “No. I’m sorry.”
Oh, the pain. I didn’t quite realize how deeply I loved that baby until I lost her. I felt she was a girl, and we named her Avery Rose. We buried her tiny body under a tree on my parents’ property.
For months, I bled. Something was not right with my body. And on top of that, I fell into a depression after losing Avery. I didn’t know how to fully process it. Several of my friends had had miscarriages, but none seemed to grieve quite as I was grieving. I had completely fleshed her out in my mind; she was not abstract. She was not a lost pregnancy; she was a baby who had died. I felt very alone. Finally after almost four months of bleeding, my doctor performed a hysteroscopy, but it yielded no results. Nothing seemed to be wrong anatomically. I read online that low progesterone could cause spotting/bleeding between periods and miscarriage. I asked my doctor to check my progesterone levels, but she wouldn’t.
My cycles continued to be abnormal with extra spotting and bleeding. My husband and I weren’t using birth control, but weren’t trying either. I didn’t know what I wanted or what God wanted. We went to a meeting with an adoption agency. After that meeting, I prayed, “God, if you want us to have another baby, make me get pregnant this cycle. After that, I want to be done. I can’t take the roller coaster of emotions anymore.”
I got pregnant that cycle, in July 2016. I was so nervous, but hopeful that this was God’s answer to prayer. But only twelve days after my positive pregnancy test, on August 8, 2016, I lost another sweet baby. I felt he was a boy and named him Everett James. I passed his tiny six-week body still in its gestational sac. He is buried next to Avery Rose.
My descent into depression became even more complete. I rationally knew miscarriages happened, but what was wrong with my body? I knew something was going on beyond what was normal. Was it because I was 35? Had I passed beyond my healthy reproductive years? I wanted some answers. My doctor referred me to a fertility clinic.
I was not a fan of the fertility clinic. They didn’t seem to understand that I truly just wanted answers to the questions about my health. I was not there with getting pregnant as my #1 priority. But they did some tests, found I was low in vitamin D, and planned to check my hormone levels the next month.
But, the next month, November 2016, I became pregnant again. About a month previous to this, I’d had a dream in which I was in a hospital room, holding an incubator with a tiny baby in it. In the dream, I got panicky about if the baby was okay. A nurse came over to me and reassured me and touched the baby. The baby started moving, and I touched it, felt it, and it sucked on my finger. In the dream, I gave the baby a name: Promise. When I processed the dream later, I wondered if it had any significance. It was so vivid. And why was the baby named Promise? I don’t normally assign dreams as being given from God, but I wondered if this one was.
So when I took that pregnancy test and it was positive, I wondered and hoped if God had, in fact, given me a promise for the life of this baby. Surely, He wouldn’t let me lose a third. Yet the fact remained that my reproductive health issues were never resolved, my questions never answered. I didn’t know what would happen.
The baby’s due date was to be August 9, 2017, a year and a day after losing Everett. Oh, how I prayed this time would be different! And it was different. Which is why everything seemed to point to life for this child.
At 7 weeks, I had my first bout of bleeding. It woke me up in the middle of the night. It was heavy, red blood. I wailed, certain I was miscarrying yet again. I went to the doctor the next day, sure there would be no heartbeat.
But there was a heartbeat. Baby was measuring big and healthy. I was elated but still so nervous. Why all this bleeding? It seemed too similar to my miscarriages. But maybe that would be the only scare.
Unfortunately, it was only the beginning. A few days later, the day after Christmas, more heavy bleeding. The next day at the doctor’s, still a heartbeat. My emotions were raw from the roller coaster. A few days later at my “official” first prenatal appointment, the doctor diagnosed a large subchorionic hematoma. My heart sunk. The same stupid collection of blood that had taken my Avery Rose. But the doctor reassured me that these things usually resolved. She even said she had NEVER seen one end in miscarriage. Maybe she shouldn’t have said that. She kept telling me the bleeding should subside. And it would subside for a few days or even a week or two at a time, but then another round of bleeding would occur.
At 11 weeks, I sat in the bathroom in a McDonald’s watching blood pour out of me like water. How could my baby be okay? But I went back to the doctor’s, and there was that little heart, beating so strong and healthy. I began to wonder if God really had made a promise for this baby’s life.
We soon found out through a blood test that we were expecting a boy. Oh, you could not have imagined a more excited family! A little brother for my girls! A son for my husband! A son for ME! Please God, I prayed, please let him join our family. The first name I found and loved was Elliot. It means “The Lord is my God.”
At 13 weeks, I truly thought we’d lost him. I began having contractions and losing blood clots. It was exactly like my miscarriage with Avery, except even worse. I sat in the bathtub, waiting to deliver my dead son. I wept with shaking sobs. Yet deep inside, I had a hope that the word “promise” meant Elliot was not gone. I clung stubbornly to hope that God really had promised this baby. We went to the Emergency Room. The room was a carbon copy of the one where the ultrasound tech told me a year earlier there was no baby. But this time, the doctor put the cold gel and wand on my belly, and there WAS my baby! He was wiggling around without a care in the world! It was in that moment I gave myself completely to the belief that God had, in fact, promised this special child. Why else would He continue delivering this baby from what seemed like certain loss?
After that awful day, the bleeding was less intense. I almost always had some sort of bleeding or spotting–ranging from brown and just barely showing up on a pantiliner, to red and filling a pad. When it got heavier, I’d call the doctor or go for a visit. But Elliot was always okay. My 16-week appointment was the most encouraging. The doctor thought my hematoma was looking smaller. (After several doctors gasping at how big it was, or telling me it was the biggest they’d ever seen, this was welcome news) Elliot was looking so great. After that appointment, I was walking on air. I finally let myself believe we’d bring this baby home. I went to Target after the appointment and bought Elliot’s first baby clothes.
My husband and I were excited for the 20-week ultrasound to get a better look at our boy. I was actually 19 weeks 5 days. We watched on the screen as the ultrasound tech guided us through the various parts of our little boy’s body. But the tech couldn’t find his stomach. I thought that was weird. The doctor came in after that and said he’d reviewed my file and mentioned how huge my subchorionic hematoma had been (“One of the biggest I’ve ever seen”). The doctor showed us on the screen that the image was cloudy. He said, “There is blood in the amniotic fluid. That’s why it looks cloudy. And that’s probably why we can’t see his stomach, because the fluid he’s swallowed has blood in it, and it’s hard to see. Probably the hematoma has compromised the integrity of the amniotic sac.” Then he said something I heard but did not fully comprehend: “This puts you at greater risk for your waters breaking early.” I remember thinking that maybe that would mean I wouldn’t make it all the way to 40 weeks. That made me sad and a little worried, but it did not dawn on me that this news would put my son’s life at risk. I was believing in a promise from God; no complication could rob my son of his life. Or so I thought.
It was that very night, at 19 weeks and 5 days, that now I think I lost my first amniotic fluid. It was brownish, and since I had been bleeding or spotting the entire pregnancy, I just thought it was more brown blood. It vaguely entered my consciousness that it was more watery than normal.
I went on with my week, even asking people to pray that my water wouldn’t break early, oblivious to the fact that it already had. It must’ve started out as a slow leak, because there wasn’t very much at first. Every day or two I’d have another brownish, watery gush that would fill a pantiliner. Then it would stop. Finally, after the third or fourth time, it dawned on me that this could be amniotic fluid. It was the weekend and I wasn’t terribly worried. Honestly, I did not know the significance of what it could mean to be leaking amniotic fluid at only 20 weeks. I didn’t know what a fatal diagnosis doctors usually saw this to be. I didn’t even Google it. Again, I was so certain that God’s promised hand of protection was on Elliot, that, just like with the bleeding from the subchorionic hematoma, I believed He would protect Elliot through leaking amniotic fluid. I emailed my doctor and heard back from both the high-risk OB and my regular OB. They told me to go to the hospital if it happened again. I was surprised. This must’ve been a bigger deal than I thought. On a Monday afternoon, at 20 weeks 5 days, I had a large gush while I was sitting at the computer, this time getting all over my underwear and pants. I talked to the doctor and she called the hospital to let them know I was coming.
When the doctor at the hospital checked Elliot on the ultrasound, he said that my amniotic fluid was a little low, but there was still some. The fluid measurement was 3.8 cm. He asked if I had been drinking enough water. I knew I had. They did a swab on me to test for amniotic fluid, and the doctor jabbered on while we waited for the test results, not very worried. I could tell he thought it would be negative. Then the nurse interrupted him. “Actually,” she said, “it’s positive.” Both their faces changed. “I’m so sorry,” the doctor said. I cried a little. I still didn’t know or understand why leaking amniotic fluid was such a dire diagnosis. Looking back, I was so clueless. They were actually sharing the diagnosis that would ultimately take the life of my child ten weeks later. But, even though it wasn’t what I wanted to hear, I had faith. God would show these medical professionals that He was bigger than any diagnosis.
It seemed that He was showing signs to people in the hospital, to people following my and Elliot’s story, to my family and me. I stayed overnight to be observed, and when they checked my fluid level the next day, I was up to 9 cm! The high-risk OB doubted the accuracy from the swab test the day before. The physician attending me called the change in fluid level “miraculous.” I believed it was a miracle! So many people had been praying for the fluid to replenish and it really had! How could I, again, doubt that God was fulfilling His promise for Elliot’s life? I was set to go in for an appointment with the high-risk OB three days later.
Two days later, though, I returned to the hospital one more time after having another gush of fluid. I got mixed messages about what now was being seen. The test for amniotic fluid came back negative this time. But when the doctor scanned me to check my fluid level, he said, “There is less fluid than two days ago. Markedly less.” What did that mean? I figured this is why God had given me a promise, something to hold on to through all the highs and lows of this rocky pregnancy. I’d be at a more definitive appointment the next day, I thought, so I’d get more answers.
I remember the day of that appointment expecting the doctor to find plenty of fluid, for him to almost brush me off as I’d felt brushed off most of the pregnancy. I thought I’d go home annoyed that they weren’t very concerned about me. I was not worried.
So when, at the appointment on March 31, 2017, the high-risk OB started talking about options for how to now proceed in the pregnancy, it took me some time to comprehend. There was not plenty of fluid anymore. He didn’t even measure it. He just said, “There are some pockets, but yes, your water has broken.” Then he delicately asked what kind of lengths we wanted to go to in order to save our baby. I said, “We want to do everything we can.” The doctor said I could be admitted to the hospital ten days later, at 22 weeks 5 days, and then they would start me on steroid shots and two days’ worth of antibiotics. 23 weeks is the earliest they would medically intervene in saving Elliot’s life if he was born. The doctor said, “We will keep you until the baby is born. If you haven’t delivered by 34 weeks, we will induce you then. You could be in the hospital a very long time.”
I also vaguely remember him mentioning that fluid was necessary to develop Elliot’s lungs. “We won’t know until he is born if his lungs have developed enough for him to survive. You could carry him all the way to 40 weeks, but if his lungs don’t develop, he still might not make it.”
I didn’t like that. I tucked it away in a corner of my mind, and have only pulled it back out now in retrospect. At least I can say the doctor warned me that what happened could happen.
I called my husband as I drove home, and that’s when it really hit me and I cried. Potentially 11 weeks in the hospital? I had two little girls to take care of! How were we going to do this? And yet, I had to take care of Elliot.
I continued the next nine days on strict bedrest at home. My girls would crawl in bed with me and we’d color or read or watch TV. I held them close, knowing I’d be leaving them soon.
I also got on a pPROM (Preterm Premature Rupture of Membranes) Facebook group and read encouraging stories. I found the American Association of pPROM website and read an encouraging study posted there. Looking back, I only used these two sources to inform my knowledge of pPROM and the potential risks to my baby. Between my “promise” from God, and these encouraging stories, I let myself completely believe Elliot and I would walk out of that hospital together one day.
The day before I was supposed to be admitted to the hospital, I awoke to the heaviest bleeding I’d experienced the whole pregnancy. It overflowed my pad, soaking my pants all the way to my ankles. It was horrifying. I thought, No! I can’t lose this baby the day before I’m supposed to go to the hospital! Looking back, I think perhaps that was my amniotic sac breaking completely, a full loss of fluid mixed with blood.
As my husband drove us to the hospital, I cried, I sat in a daze, hoping, praying God would continue His promise of protection over Elliot’s life. Would he even be alive when we got there?
Again, he was alive! The woman who would become my high-risk OB in the hospital was so encouraged that I was no longer bleeding. Elliot bounced around on the ultrasound screen as always. But the doctor once again did not go to the trouble of trying to measure the fluid. She said, “There’s a little pocket of fluid around his face, and that’s encouraging.” Oh, how I believed all this was part of God’s promise! Elliot was still alive! And though there was hardly any fluid, the place where there was fluid seemed to be right where he needed it: around his face where he could breathe it.
That day, April 9, I was admitted to St. Joseph’s Hospital. They gave me steroid shots and put me on IV antibiotics to protect against infection. A doctor from the NICU came to have a talk with my husband and me about the scary statistics were we to have Elliot as an “extremely premature baby” (23-24 weeks). He was grim. I tried not to let his hopeless realism get to me. I remember saying to him, “I hope I don’t see you for several more weeks!” To which he replied, “That would be outrageous.” Ouch. He really didn’t think I’d be pregnant much longer.
But I was already beating statistics. From what I’ve read, most women go into labor within 48 hours of their water breaking. I’d already been leaking fluid for three weeks, and now my waters had completely broken. Every day that I went on without developing an infection or going into labor, I was beating the odds. And the days and weeks did go by. 24 weeks. 25. 26. 27. 28! Odds for a premature baby went up dramatically after 28 weeks. Again, I let myself be encouraged by those statistics and every positive story. The study on the AAPPROM website said that for women who remained pregnant a certain number of weeks after having PPROM between 18-24 weeks, survival rates for babies was 90%! I just knew Elliot would be okay!
I have since read two studies that give much bleaker statistics. One found that if a woman’s waters break while her baby is pre-viable, survival rates are only 50%. Another study gave the survival rate at 10%.
Just studies. People’s stories that ultimately don’t account for the fact that there is a God in Heaven who numbers the days of all people. Why do some babies live and some die? This is the question all of us bereaved mothers grapple with.
But while I was pregnant, I let the studies and stories buoy my hope: One mom on the Facebook group who pPROMed at 17 weeks with no measurable fluid and her baby was perfectly healthy! Another one whose doctor said her baby had a 1% chance of survival, showing us a picture of her now healthy two-year-old! Story after story of hope. And when, well, one mom here and there shared with our group that she lost her baby, it was so sad. I shed tears. And then (I can’t believe this), I would feel awash with gratitude that that wasn’t going to happen to me.
Well-meaning friends and family told me often of a person they knew whose son or cousin or nephew had been born at 26, 25, 24 weeks and was now a 180-pound linebacker or something. Now these stories break my heart and feed my anger, but back then, they just proved that Elliot would be okay.
In the hospital, as the days and weeks went by, I had a few instances of bleeding that had me moved to the Labor & Delivery department to be put on continuous monitoring and on a magnesium drip to protect Elliot’s brain. This happened once just a week after being admitted. It happened again over Mother’s Day weekend, when I was 27 weeks 3 days. I had some contractions, and the doctor checked my cervix. One centimeter. Definitely not in labor. But I was so thankful I was there in the hospital, believing it was God’s plan to bring his dream of my promised Elliot alive and healthy, though premature in an incubator, to fruition. He had me in the best place to take care of Elliot and me.
The hardest part of being in the hospital was being away from my family. It was stressful and traumatic in many ways, but we all knew that once we had Elliot at home, it would have all been worth it. They visited several times a week, and we found ways to make the best of our situation, having fun in my hospital room, or the courtyard outside, or in the hospital cafeteria.
The best part of being in the hospital was my uninterrupted time with Elliot. Oh, how I fell in love with him! I listened to his precious heartbeat an hour each morning and each evening, felt his movements and really got to notice them, because I wasn’t chasing around two preschoolers, like I would have been if I’d been at home. I was so used to the feel of him, especially since, without fluid, he wasn’t able to freely move in my belly. He was in a transverse position pretty much the entire time I was in the hospital. I knew where every part of his body was. I talked to him and sang to him and prayed for him, but I wish I would have done it more. I took for granted that I would have a lifetime with him, so I worried about other things more. I wanted to be productive, so I read things and wrote things and did professional development for my teaching license….
If I had known that was my only time with him, I would have just sat each day with my hands on my belly, relishing every moment and every movement.
As I progressed further, a few things began to happen. Occasionally I started having contractions. Occasionally I’d have “bright red” bleeding, which jumped my medical team into action because of the concern red bleeding could signal a placental abruption. Occasionally Elliot’s heart rate would dip while I was on the monitor, a concern because babies with no fluid can more easily lay on their cord and compress it. Again, I was just so thankful I was in a place where God was going to use the medical team to keep Elliot and me safe.
When I was 29 weeks and 2 days, a friend was visiting and having lunch with me in my hospital room. I felt some leakage on my pad and excused myself to the bathroom, where for the first time I saw a bright red blood clot. I called my nurse. She looked at it and put me immediately on the heart rate monitor. My friend stayed and we continued chatting and started laughing about something. My nurse ran in. I thought my laughing had slipped Elliot off the monitor, but after a moment of listening I realized his regular 150-160 BPM heartbeat was thumping much slower. 100. 90. 80. I covered my face and started crying. My nurse called something over the speaker and shifted me to my side. Elliot’s heart rate was still slow. Suddenly a dozen doctors and nurses were in my room, including my high-risk OB. Then they were disconnecting my bed from the wall and running me to Labor & Delivery. They hooked me up to the monitor again and Elliot’s heart rate was coming back up. Everyone breathed a sigh of relief. I stayed the weekend in L&D on magnesium and continuous monitoring. Looking back, what a lucky mommy I was to have hours and hours on end like that with Elliot’s heartbeat as my comforting background noise. How desperately I wish I could heart that heartbeat again. I miss it.
Yet again, this instance would serve to confirm to my heart that God completely, miraculously continued to perform miracles on Elliot’s behalf. What if my nurse had not put me on the monitor? What if I had been downstairs in the cafeteria? Elliot could have compressed his cord and died! But, of course, God promised this child so he would always take care of Elliot.
I had some considerable contractions over that weekend. There were a few hours where the contractions were regular and painful. I called my husband and told him to pack a bag just in case. The doctors hesitated to check my cervix because of the infection risk to a PPROM patient. Finally they did, but it was just 2 cm and showed no signs of active labor. The contractions finally subsided, and they returned me to my antepartum room a couple days later, on a Sunday morning. I was preparing myself to be in the hospital for the long haul, all the way to 34 weeks. I was very tired of being in the hospital and away from my family. I even struggled with wishing Elliot would just come. Now I am ashamed for thinking that. In my belly, Elliot was safe. In my belly, Elliot was alive. Every day I had with him was a miracle. But since I “knew” he would live, I was having a hard time appreciating being pregnant. Yet, I would always think, God will take him out when it’s safer for him out than in. I just wanted my baby to be okay. I would endure anything for that to happen. And I trusted God’s wisdom to cause all the details to work out exactly as they were supposed to.
The next day, Monday May 29, when I was 29 weeks 5 days and had been in the hospital for seven weeks, I awoke to a contraction and a little more red bleeding. The doctor on call moved me back to Labor & Delivery. I remember being disappointed that I wouldn’t get to eat. I laid in the L&D room on continuous monitoring, and they decided not to put me on magnesium just yet because my bleeding was not very bad. Every time the nurse would check my pad, she’d say, “Oh there’s not much there.” I thought it was just another precautionary day, and I’d be back in antepartum before too long.
Around 9:00 a.m. I started having some contractions that felt like the ones I’d had over the weekend. They were painful, in my lower back, and I had to breathe through them. But they weren’t regular. 10 minutes apart. 20 minutes. 30 minutes. 8 minutes. All over the place. At one point, I felt Elliot moving like crazy and wondered if he could’ve changed position. The doctor and nurse kept checking on me, but none of us had much worry about was going on. Around noon, the doctor said if I was still having contractions in an hour, she’d check my cervix. She also said she wanted to do an ultrasound to check Elliot’s position. The nurse gave me Tylenol and a heating pad for my back.I kept myself busy paying bills, of all things, and writing down when I had a “strong” contraction. And listening to my baby’s beautiful heartbeat.
My nurse came in around 2:30 and I told her the contractions were getting more uncomfortable and I’d like the doctor to check me. About that time lots happened all at once. I felt a low contraction, almost like I had to push. The doctor came in with the ultrasound machine. The nurse told her about my contraction. The doctor did a quick ultrasound and said, “Oh, the baby has change position!” He’d gone from transverse to breech just that morning. Then the doctor checked my cervix. She calmly (almost too calmly) looked at the nurse and said, “Okay, she’s at like nine centimeters.”
What? NINE centimeters?!?!
Then it all went haywire. I was in the middle of comprehending this, asking her what was going to happen, she told me we’d move toward a c-section and probably had time to put me on a spinal so I could be awake, I called my husband, and then…
Elliot’s heart rate plummeted down to the 60’s. It was more terrifying than I can describe.
Suddenly, the nurse was calling over the intercom and disconnecting my bed from the wall. A half dozen people filled the room and they sprinted me down the hall. I closed my eyes and prayed, “Jesus, Jesus, Jesus.” I put my life and Elliot’s life in the hands of the Lord.
Then I was in an operating room, hands all over me, preparing me for surgery, someone rubbing my belly I think to stimulate Elliot. It was so awful. I don’t think I have yet really processed how traumatic Elliot’s birth was. I heard someone say, “You’re going to sleep now.”
And the next thing I remember was someone saying, “Heidi. Heidi.” I opened my eyes and was in a recovery room with a doctor and a nurse and my husband. I felt so awful. The doctor asked, “How do you feel?” And all I could croak out was, “My throat hurts.”
But I just wanted to know about Elliot. My Elliot! My baby who I had been fighting for the past six and a half months, the past nine weeks on bed rest, seven in the hospital. HOW WAS ELLIOT? All I cared about was him.
Then my wonderful husband was at my side holding up his phone with a picture of my baby boy, Elliot William, ALIVE, and holding my husband’s finger with his perfect little hand. Relief just flooded me. It got even better when they told me he was 3 lb. 14 oz. What a big baby for only 30 weeks! We’d made it! I truly thought all the worst was over. Finally, my baby was here. And even if our lives would now involve weeks or months with a baby in the NICU, it didn’t matter. God had delivered Elliot from a broken pregnancy in my broken body. His promise really must’ve been true. It breaks my heart now to remember how perfectly content and happy I was. I pictured our lives with Elliot, with my girls having a little brother. My husband and I gave all credit and glory to God and continued to trust God’s promise that Elliot would live. I remember preparing myself for ups and downs in the NICU, and knew I would hold on to God’s promise to help me through those times.
My husband left me to be with Elliot and I anxiously awaited news about when I would get to meet him. My husband and I texted back and forth, and he told me that the doctors were having a hard time getting Elliot’s oxygen levels stable. It was scary, and I turned to the Lord to help me not to fear. I posted updates on Facebook and asked everybody to pray. I wanted a miracle, somewhere in all this, for God to do something that doctors couldn’t explain and would prove that God was the one sustaining Elliot! Perhaps God had always intended all these complications so He could show His glory and we could share Christ with people who didn’t know Him. How special Elliot was to God, I thought!
After a couple hours, my husband came back with the doctor who had delivered Elliot and had been working on him. She was very somber. She said that everything indicated Elliot’s lungs were underdeveloped, that his left lung was inflated, but his right lung was not. Air was leaking into his chest cavity (called a pneumothorax). They were going to put in a chest tube to drain the air and help his right lung inflate. She said that she didn’t know if his lungs were developed enough for him to live, and only time would tell if they were. Oh, I hated hearing that. I had so hoped that God would develop his lungs despite the lack of fluid. But, I thought, this is how God was going to show His glory, by fulfilling his promise for Elliot’s life despite the difficulties with his lungs. I heard her and nodded my understanding, but would not even let my mind consider the worst possibility. Elliot was alive and he would stay alive.
Finally, almost six hours after he’d been born, I was allowed to see him. The chest tube helped, along with putting him on nitrous oxide, and his oxygen levels were stable. First, my nurse took me to see him in my bulky hospital bed. But there was not space in his little NICU room. I couldn’t get close enough to really see him, let alone touch him. So I asked her to take me back and help me get in a wheelchair. She did, and it was hard. I felt so miserable and was still connected to an IV, a catheter, and an oxygen tube. But nothing mattered compared to being with my son! And it was all worth it as I put my hands in the incubator and touched him for the first time. He opened his sweet eyes and looked at me. He wrapped his little fingers around my finger. My heart was full.
After only fifteen minutes, I broke into a sweat and almost passed out. I had lost a lot of blood during delivery. They took me back to my antepartum room for the night. I was sad my first moments with him were so short, but it was okay. Now that he was here, now that his oxygen was stable, I truly believed there was nothing to fear. I went to bed that night more concerned with getting myself feeling better so I could really start mothering him.
I remained awake all night in constant pain, but so deliriously happy about having my little boy. The nurse tried a couple times to have me sit up and try to stand, but anytime I’d even sit up I would almost pass out. By morning, they decided I should have a blood transfusion. This meant more time away from my Elliot as I awaited all these things. But I kept thinking, just get better and then I can really start spending time with him! My husband spent the most time with him that Tuesday May 30, when Elliot was 1 day old. I finally got my blood transfusion that afternoon, and it took a while. After it was done and they checked to see if I could stand a little, they disconnected me from my IV and catheter. It was that afternoon when Elliot was already over 24 hours old, that I finally got to see him again. I sang to him. I cradle held him in the incubator. But after only 45 minutes with him, I felt so sick again, I went back to to my room. I finally slept some. Just recover, get better, I kept thinking. Of course now, I wish I would’ve spent every single moment with him. I had no idea.
My husband went home and my sister-in-law came to stay the night. I spent more time with him that evening, feeling refreshed from a little sleep. But I was still exhausted from surgery and pain medication, and had so much discomfort. It was hard for me to stand by his incubator for very long.
The next day, Wednesday May 31, Elliot was 2 days old, my mom came to meet him. I wish I could remember all the details of his few days in the NICU with more clarity, but they all kind of run together. I know I just spent a lot of time with my hands in the incubator, humming to him. I changed his diaper and took his temperature. I fed him little bits of my milk on a swab. My breast milk was coming in so well, and I was such a proud mama to be able to take care of him in this way. I still felt bad on Wednesday and would go back to my room to recover often. My husband returned and stayed the night.
By Thursday, June 1, Elliot’s 3rd day of life, I was finally starting to feel a little better. My sweet husband headed home that day. He had a vasectomy scheduled for the next day, of all things. We’d discussed it months before, and both agreed we couldn’t endure any more loss, and we needed permanent birth control. When Elliot was unexpectedly born that week, we talked about if he should reschedule the surgery. But Elliot was so stable, and we decided it was actually a “good” time to do it, since the girls were already cared for with grandparents, and Elliot and I were stable in the hospital. That Thursday morning, my sweet husband Dustin said goodbye to Elliot, and told him, “I’ll see you next week!” He planned to return Sunday if he felt good enough. But that was the last time he saw Elliot alive. I cannot express how much it has broken both our hearts that he didn’t get to see Elliot his last two days of life. There’s no way we could’ve known.
I spent considerable time that day trying to do some walking. My girls came for one last visit in the hospital, but they were not allowed in the NICU to meet Elliot. This also has made me very sad. The only time they ever saw him, he was in a coffin.
Other family members visited that day, and I spent lots of time with my boy. They tried turning off his chest tube to see if his pneumothorax had healed. He did fine at first, but at 8 pm that night, his heart rate and oxygen levels dipped majorly, and they turned the chest tube back on. He stabilized. It was a scary several minutes as they tried to assess what to do, and watching those critical numbers fall. But, I knew God had given me his promise to help me through those scary times. I remember Elliot’s nurse telling me I did a really great job staying calm. I think I told her that I was just praying and trusting God for Elliot’s life.
The next day, Friday June 2, Elliot’s 4th day of life, there was a lot of paperwork to do as I was officially getting discharged from the hospital. After almost 8 weeks! I was overjoyed. There were boarding rooms right next to the NICU I’d get to stay in for three more nights. I couldn’t wait to be closer to my little guy. And I was finally feeling better! Except my feet had just begun to swell like balloons.
Once all the paperwork was done, and I was discharged, I moved into my boarding room and spent so much wonderful time with my little guy. He continued to be stable, though his oxygen need had gone up slightly over the past two days. I wasn’t worried; this was all part of the NICU roller coaster I’d heard about. I was so ready to become a NICU mama. I was going to become an expert in all things Elliot and all things NICU, I just knew it. More visitors came that evening, Elliot’s grandma on my husband’s side, and my brother and sister-in-law, sharing the news with an adorable onesie that Elliot was going to be a big cousin! Yay! Another baby in the family to grow up with Elliot! Truly, if happiness was something tangible, it would’ve filled the room right then.
I stayed up late with Elliot, and delivered him some milk in the middle of the night. I feel guilty now that I slept until 8:00 the morning of June 3, his 5th day of life, and didn’t get to him until 9:00. But, of course, I just thought that the more I recovered, the better I would be for Elliot.
My memory of him that morning is one of the sweetest I have. There were no visitors, and he was stable. It was just Elliot and Mommy. The nurse had put little blue mitts on his hands to keep him from pulling at his cords. My feet hurt from the swelling, but I stood there the best I could. He grasped fingers on both my hands with his little hands. He’d grimace when I tried to pull away (thinking I’d put my feet up for a while), so I pulled up a chair and got as comfortable as I could. I sat there with him for at least an hour, maybe an hour and a half, my fingers in his mitt-wrapped hands, humming to him over and over again. I wonder now if he knew this was his last day, and if he was giving his mommy a special time to remember.
The roller coaster began again soon after that. Around 11:00, his heart rate and blood pressure were having dips. It was scary. There were lots of people in his NICU room. I tried to stay calm, tried to pray, tried to hold on to God’s promise. They did an X-ray and found that his chest tube had stopped working (probably it had gotten clogged), and so his pneumothorax was huge and his right lung was not working. They immediately put in a new chest tube. He stabilized. I praised God.
The doctor showed me the X-ray of Elliot’s lungs, showing how greatly the pneumothorax had affected his internal organs, and that it had probably been pushing up against his heart, which is what caused the drop in heart rate, and also why the nurse couldn’t hear any movement in his bowels when she checked. My poor baby! Oh, it hurt me to know there were all these complications going on inside his perfect-looking little body. But I asked the doctor why his oxygen didn’t drop during that time–after all, a whole lung hadn’t been working. The doctor said, “I don’t know. It doesn’t make sense.”
But it made sense to me! It was clearly another miracle from God, which I proclaimed on Facebook to the hundreds of prayer warriors who loved little Elliot.
My big brother was the last of the family to meet Elliot, and he came that afternoon. Within all the craziness of the morning, I hadn’t taken any pictures of Elliot that day. The only pictures I have of him alive from his last day are kind of blurry ones from my brother’s cell phone.
All week, Elliot had little “sunglasses” on to protect his eyes from the light they shined on him for his jaundice. The only time I had seen his eyes was briefly on the night of his birth. As my brother and sister-in-law were getting ready to leave, the nurse said they were ready to turn off the light and take off his glasses. Yay! I would finally get to know my baby’s face. He was so stinkin’ cute. The nurse gave me a little breast milk to feed him on a swab. I put some in his mouth, and he just popped his eyes open to look at me. The three of us giggled as quietly as we could. It was just so cute. Again and again, every time I put the breast milk in his mouth, he popped his little eyes open. They were dark and beautiful and clear.
Why, oh why, did none of us think to take some pictures or a movie of that moment? I guess because we all believed there’d be hundreds more of those moments to come.
Around 4:00 pm, after my brother had left, I was wiped out. I had just finished pumping. The nurse said that Elliot and I could both use a nap. I agreed. I headed back to my boarding room after telling my little guy I’d be back soon.
How I wish I’d never left him.
As I walked back to the NICU at about 5:30, I remember being so excited to spend the evening with my little guy now that I was a little more refreshed, and that I was finally feeling a little more recovered from my c-section. I was at the sink washing my hands when a nurse walked briskly to me and said, “They have to replace Elliot’s chest tube again.” I nodded and she led me to a chair at the nurses’ station just outside his room. A medical team stood around him. This was a hard thing to watch, but I’d watched it twice before in the past five days, and whatever was the problem had been fixed. I talked to God. I prayed. I hated seeing my little guy struggle, but I did not for one second consider Elliot might die. I don’t really remember much as I was sitting there. I remember texting updates to my husband. I remember hearing the oscillating ventilator. I remember starting to cry and someone saying, “Will someone go reassure that mom?” And whoever it was did reassure me. Did they all believe still that Elliot would be fine?
The next thing I remember is the doctor coming out of Elliot’s room and motioning for me to come talk to him. I thought we’d discuss Elliot’s present difficulties and he’d give me an update or ask my permission to try some new intervention. So it didn’t quite register when he threw up his hands and only said, “It’s not working!”
Okay. I breathed deeply. So whatever medical interventions they were trying were not enough. This actually made sense to me in that insane moment. God apparently wanted to show His glory through Elliot’s little life, and what better way than showing this hospital staff a bonafide miracle?
I said, “Can I pray over him?” The doctor nodded vigorously. “Sure!”
I still wonder, what did he think? Did he think I was praying over Elliot as a blessing before he died? Did the doctor hope prayer could heal him? Did he just want my son and I to be together?
I posted on Facebook for everyone to pray because the doctor thought we were losing Elliot. I couldn’t wait to return with an update of the miracle of Elliot’s return from the brink of death. Because Elliot would. Not. Die. God could not possibly have given that promise and confirmed it in so many ways and through so many people, just to break His promise now.
I put my hands on my baby’s head and little feet. A nurse next to me applied more pressure on my hands. Did she think that would heal Elliot? Or that my prayers would be heard more? Or was that for my benefit? All I could cry through my tears was, “Jesus, overcome. Jesus, overcome. Jesus, overcome.”
The rest of it is fuzzy. At some point they said, “Do you want to do skin to skin?” Of course I did! Maybe that’s when he would be healed and start breathing. I think I saw a dramatization of something like that on a Facebook video once…
Suddenly there was a chair behind me and I was sitting down and Elliot was on me and we were wrapped in warm blankets. Someone was manually pumping oxygen for him. It’s all a blur. I don’t remember when they took his tubes out and stopped pumping his oxygen. I do remember them asking me how long it would take for my husband to get to the hospital. That was actually the first moment it clicked in my head that they were saying my baby was dying. Why else would it be urgent for Dustin to get to the hospital? I remember at some point the doctor listening to Elliot’s heartbeat with a stethoscope and saying, “Very faint.”
And then, somewhere around 5:55 p.m., he put that stethoscope on Elliot’s precious little back and said, “He’s gone.”
The world caved inward on me at that moment. How many times have I relived that moment in my mind, only wishing it was different? Wishing, instead, that the doctor had said, “His heart rate is going up! He’s breathing on his own! It’s a miracle!”
But that did not happen. Elliot died in my arms. He remained in my arms for the next twenty hours, and then we put him in the arms of a hospital social worker. We saw him and held him again a week and a half later, right before his funeral and burial. We didn’t have an autopsy done, but the official cause of death on his death certificate was pulmonary hypoplasia. His lungs just hadn’t developed enough.
I totally believed we’d bring Elliot home. But now home is filled with his absence.
I have cried every day in the past two months, often multiple times with gut-wrenching sobs for hours at a time. The shock and disbelief and anger have been so profound. I didn’t know emotional pain like this was even possible. Only very recently have there been days that have felt a little “better.”
I don’t know how God will mend my heart; I just know He is the one who will have to do it. I am broken by Him, so I can only be restored by Him. I still believe He’s there, I just don’t feel like I know Him anymore.
Thank you for reading my story. I know it is long. I just couldn’t leave out the details of my babies, for the existence of each one is of incalculable worth. I didn’t get to have any memories with Avery and Everett. But with Elliot I got a long roller coaster of a pregnancy, and five precious days with him in the NICU. My story of his life is all I really have of him now.
You can email Heidi at heiditreibel@gmail.com
and read her blog here: heiditreibel.wordpress.com
