Aftermath After Birth

1 May

Even though Ben’s birth is at the center of our story, there are many elements from which we are recovering. Some physical, some mental. This post is mainly about the physical recovery. For my brain’s sake, I’ve been organizing it all in my head and heart.

Daddy

Daddy and Ben during cooling

Because I’m a once a journalist always a journalist, I have interviewed Drew several hundred times about his perspective on Ben’s birth. After I was put under anesthesia, there is about a 45-minute window that’s completely void to me. That’s where Drew comes in.

It’s one thing to have your own take on trauma. Then to know and learn someone else’s take, and to see it was just as hard and just as heavy, only in different ways, is tough. You realize you have to not only recover from your own hurts but also from the referred pain of someone you love. And it goes vice versa.

At 8:41 p.m. on March 28, 2019, the moment of Ben’s birth, Drew was sitting alone in a single chair in an empty hall across from an operating room. Just outside the double doors our three girls were up way past their bedtime, playing in the waiting room with their grandmother.

At an unknown time, the assistant surgeon for my C-section came out, gently kneeled by Drew, and told him doctors were still working on his wife but were having a hard time resuscitating his baby. He told Drew to pray. And he asked if there was anyone Drew could contact. Quite obviously, Drew feared the worst. He texted our close friend: I think we just lost Ben.

Then, the doctor was back out, saying they were still trying to revive Ben. Drew sighed some relief. Time went by. Two nurses showed up to stay with him and keep him company. Finally, the doctor was out one last time to report Ben was “pinking up.” Ben’s medical papers point to his “central pinking” upon admission to NICU. And the first thing I was told upon waking was that my baby had begun to “pink up,” the shock of a lifetime.

I have a copy of the handwritten notes taken during Ben’s resuscitation. It also has a jumbled list of six NICU staff members who worked on Ben. Six. I later had his picture made with the two women who resuscitated him.

I imagine this being jotted down as it happened in real time:

2041 Baby out
2042 Bulb syringe
2042 Chest compressions + blood gases + mask
2043 Endotracheal tube; attempts continued
2045 Chest compressions continued
“Epi” is written but marked out (they did not have to push epinephrine to jumpstart Ben’s heart but had considered it; this is a “last resort”)
2048 Heart rate above 80
2049 Heart rate above 165; O2 sats 92%
2057 Transferred to NICU

Drew recalls that as soon as he learned Ben was back, things moved fast. In reality, everything was fast. Our hospital did everything right, everything well, and everything efficiently.

He couldn’t hear much going on in the OR, but did pick up on the nurses swapping out Ben’s transfer cart because the cart was too bloody, and they hadn’t wanted Dad to see.

While someone wheeled Ben and someone manually compressed his vent, breathing for him as they went, Drew hurried alongside down the hall to the NICU. He was about to receive the NICU Daddy Crash Course yet again. And the neonatologist we knew from seven years back was right there to give it.

First ever photo taken of Ben, as he was admitted to NICU, 9:05 p.m.

Ben’s admission notes actually mention Drew, which I think is endearing:

Upon admission to NICU, father at bedside. Reviewed with him plan of care, including therapeutic hypothermia, umbilical artery catheter, umbilical vein catheter, EEG, MRI, neuro consult and concern for neonatal encephalopathy with risk of cerebral palsy, mental retardation and long-term developmental concerns. Father voiced understanding and agreement.

I’m impressed with Drew for “voicing understanding and agreement.” What a lot of information for him to process. And he also remembered to take pictures of Ben for me, something that had easily slipped his mind when our firstborn was admitted to NICU.

When I saw him in the recovery room, Drew whipped out his phone and showed me our little boy. He was naked, so I could see he was, in fact, a boy. And he was already cooled, intubated, and cute.

Cooling mat and ventilator, 9:11 p.m.

Mama

First-ever picture with Ben, 2:06 a.m. If I look like I’d been through the ringer, it’s because I had.

Even before I was put to sleep, I wondered in my head what it would be like to wake up. The slightest part of me knew I might not actually awaken, but before I could go too far down that path, I was already awake.

This was my third time to be put under general anesthesia. Once for tonsils, once for a knee. Now for a baby. It’s always so fascinating to me. One minute you’re being prepped, waiting, very aware that you’re still awake. You purposely keep your eyes wide open, but don’t actually ever remember closing them. The next thing you know, your eyes had been closed and are now open again. Time didn’t pass at all yet somehow it did, and it’s all over. You’re in a new room with new people and you feel very, very different.

I wondered if Drew would be kneeling by my bed when I woke up, eyes red and teary, about to break some bad news about Ben. It was such a likely scenario. I’d had enough conscious time before surgery to picture what it would be like to wake up to that. I can see him there even now, kneeling. But that isn’t what happened. That’s not the way it went that day. I’m so thankful to my Father in Heaven for delivering our family from that very real possibility.

When I woke up, before I even had fully remembered what just went down, people were telling me left and right that my baby had begun to breathe, had “pinked up.” I just sat there listening, in awe, not talking except to confirm that Ben was a boy, and I asked what his birthday was.

Then, the pain. Wow. It was something else. I learned that when you have an emergency C-section without having had an epidural, you wake up to the full-on effects of not being numb. The anesthesia just blocks pain receptors during the surgery; it doesn’t numb you. So waking up was a wild ride.

My nurse and my doctor were over me, trying to control my pain. They pushed morphine every five minutes as long as I wanted it. The five minutes went by so slowly each time—I kept asking for more. And my throat felt funny from the intubation, but of course I couldn’t cough to clear it. Breathing was hard. I asked for water a lot. It took a long time to finally be able to say that the pain wasn’t completely and utterly overbearing.

A clock on the wall showed around 9:30 p.m., so I know by the time I woke up, my sweet Ben had long been resuscitated, and long been a patient in NICU. I’d conveniently slept through some of the worst moments of my life.

Soon, the neonatologist arrived at my bedside. I had spent a lot of time with him in the past, and it was a strange thing to see him there. I know you, I told him, and he said, That’s what I hear.

He told me he would tell me a lot of things I may not yet understand, and then he did, giving me a very similar rundown to what he told Drew. The information was heavy and hard to absorb, but needed; I don’t think I “voiced understanding and agreement” quite as well as Drew. I don’t remember every detail, but I do remember realizing that the doctor seemed actually very encouraged. I truly think he was pleasantly surprised given Ben’s rough start. He had expected much worse.

I don’t recall what I asked him, but it was a question no one could answer then or even now, about Ben’s future and how this birth would affect him over the long haul. The neonatologist told me, the first of many times we’d hear this, Sometimes you just have to grow these babies and find out.

My thoughts at the time were: Okay. He thinks my baby is going to grow up!

At that point the pain of the words “without oxygen” or “brain damage” or “developmental delays” didn’t hit along with the physical pain. I was just thankful Ben had survived.

My doctor and nurse—Nurse M—agreed. They literally were at my bedside for half an hour, just talking with me as I recovered, and crying, praying, praising, and holding my hand. My doctor explained as best she could what had happened, and just how extremely rare it was. She told me what occurred but could not begin to explain why. She’d never seen a situation like mine in her entire 30-year career, when a uterus ruptured, completely, in a woman who’d had two successful VBACs, and who was not even in labor. Coupled with all that, my placenta abrupted, a less rare but still major obstetric emergency. The combo of the two almost never happens, apparently.

We had many more doctors visit us, stop us in the hall or literally chase down our elevator, just to echo the same sentiments. Maybe they’ll publish a medical journal on me, and on my surviving baby. Maybe I’ll get a prize.

When you read about some of the more devastating outcomes of uterine rupture, they still all usually occurred within the protected walls of a hospital, and under supervision. I remember with my first VBAC, one nurse’s sole job was being glued to my monitor the entire labor. Needless to say, uterine rupture is a horrifying complication, even when you rupture one floor above the OR, like me. Our medical team acted swiftly.

My doctor also seemed astonished I hadn’t lost more blood, and that I’d made it to the hospital in time. She let me know that getting pregnant again would be very dangerous at this point, and has since reminded me often. My risk of re-rupture is extremely high.

We talked over everything exhaustively the first week. I just knew I’d caused it all. I asked a million times if I did. I apologized a million times, to anyone who would listen. But my doctor has settled that issue for me more than once; she said I could have been on bedrest and it still would have happened. Quite unsettling is the fact my uterus could have ruptured in any of my last three pregnancies, she said, and in any trimester. In my mind, it could and would do it again. It is simply unpredictable, unpreventable, and catastrophic.

I know Ben’s birth shook a lot of people up. You could see it in their faces, hear it in their voices. Even before he was delivered, I could just tell. The room was edgy and raw. Medical professionals are obviously prepared for the worst, but I think complete uterine rupture is just one of those worsts that’s so unlikely and hard to unsee. I don’t think anyone could truly prepare for such havoc—not me, not my doctors, and certainly not my baby. I later told one of the people who had been in the room that night that I’d need therapy after all of this—and she said she was going to need therapy, too.

As I was waking up more and more, Nurse M let me know straightaway that our hospital encourages staff to share their faith, and so she began and didn’t stop. She talked about God’s sovereignty, redemption and love. She prayed with me and kept me calm. She gave me the good meds, yes, and soothed my soul. If there was ever a definition of a Godsend, Nurse M is it.

In fact, we believe she was the first person to start a weeks-long cycle of nonstop prayer over Baby Ben and me. She later told us when she entered the OR that night, she’d been hastily informed She’s your patient and started praying right away while assisting me. When Ben came out, she was frightened and shocked, but she prayed. She prayed for me and over me in recovery. The next few days, she had prayed. And the last time I spoke with her, she was still praying. We are thankful that the Lord sent us Nurse M along with so many other wonderful caregivers.

In recovery, I talked to my mom and sister on the phone as Drew held it in place. I really don’t know what I said, other than expressing my grief that my little baby had been born without a heartbeat. My uterus ruptured and my placenta tore away just rolled off my tongue. I was already settling in to my new story, new label. I kept saying I didn’t know what I did wrong. They both assured me they were on their way from Texas and Mississippi, and they were.

Drew showed me pictures of Ben, and reported the “good things” that there were to report. There was much unknown. And I apologized profusely over and over; I knew I had done something wrong, somehow, to our baby.

In 2016 in the hours after Sally was born, Drew and I kept looking at each other in amazement. We couldn’t believe she was here. It was so fast, blindsiding, a true surprise in the night. At 4 we’d been sound asleep at home; at 6 we were holding our baby in our hospital room. It was a good blindsiding, a happy surprise. Fulfilling and an absolute high. We wanted to do that again.

But it wasn’t so with Ben, even as his birth was more blindsiding, much faster (it’s hard for me to believe birth could be faster than Sally’s, but alas.) We didn’t get the joy of looking at each other and marveling over and over. There were no happy exchanges or Wow. We did it. It was just an acceptance that what had happened had happened. We were sad, our heads hanging.

I’m unsure when I got to a regular room, but Nurse M was with me there, and all night, too. One of my greatest friends was in my room waiting for me. I couldn’t believe it; it was so wonderful for her to be there. It was late! And she had a newborn, too. Later that night when her son wouldn’t fall asleep, she rocked her little boy while praying for mine.

Around 1 a.m. it hit me that I never laid eyes on Ben on the day of his birth. It would end up that I wouldn’t hold him the month of his birth. I began to ask to see him.

Several times I was told no in a well-meaning way, because of my condition. But I persisted. I knew if they didn’t let me see my baby, I’d fall into a major, painful crying spell and be in even more serious shape.

I paged the charge nurse, and when she came I explained to her that I needed to see my baby. I wouldn’t get up from my wheelchair, I wouldn’t touch him, I would behave. I told her I’d had a baby in NICU before and that I could handle it. I didn’t really plan to take no for an answer.

So she agreed and off I went. And actually, I was able to touch him a bit, on his foot. When babies are on the cooling mat because of a brain insult at birth, minimal stimulation is of high importance, hence his eye coverings. My first-ever picture with Ben was taken at 2:06 a.m., at his bedside. The next morning, I cupped his head in my hand and prayed for his brain.

Praying for Ben’s brain, March 29, 2019

Over the next several days, especially at night, I did begin to have crying spells. Hormones didn’t help, of course. I remember I always cried about not knowing why all of this had happened, being afraid Ben’s little brain was hurt, that he hadn’t done anything to deserve it, and that I just wanted to hold him. Those were hard places. And it physically hurt so very much to cry like that. Thank you, major abdominal surgery. I would have to do little breathing exercises to help me to focus and to stop my crying. Drew and my nurses were always very helpful.

This got better eventually. And I got better eventually, all the while recalling that, yeah, C-sections are rough. I’d just forgotten.

I had no blood transfusions, thankfully, and my pain was controlled with oral medications. I’m told the rupture probably won’t affect my long-term health. Another pregnancy, though, could be life and death. (Nevermind that this one was already life and death.)

After an extended six-day hospital stay, I was discharged home, without my baby. It was something I’d done before and hoped never to do again. Still, the sun was shining, the skies were blue, and my house was nice and clean. A big, beautiful blue bow adorned the door, and my dog wagged her tail when I came in.

It took some time to muster the strength to go upstairs, but I did it, and I plopped right down in the rocker in Ben’s nursery, imagining one day that he’d be there with me. Next, I started on his baby book. These were good memories for a sad day. And we were right back up to the hospital to visit Ben in no time.

Rocking Ben in his room on the day he came home, April 8, 2019

Ben

I don’t know when things began to go bad for Baby Ben on his birthday. Was it when my pain began, or before? Was it literally right at the time of rupture? I just don’t know and can’t know.

I do know he quit moving well before he was born. I will always wonder, especially about the strange pain I felt high in my abdomen about an hour before birth. It felt so much like a foot, but a very pronounced and rigid foot. It was not at all a normal thing to feel in pregnancy. Palpable fetal parts—being able to make out or feel fetal parts outside the uterus—is a sign of rupture. But I am sure there is no way I had ruptured at that point. I’m really confused about what I felt and what I experienced before my uterus ruptured at the hospital. I like answers, and I like to analyze, so the not-knowing is challenging for me. It’s also the way things go, though, so I’ll need to get over it and move on.

Either way, Ben definitely began to decline when in triage, when the doctor told me his heart was barely beating. That dismal “agonal heart rhythm,” often seen “pre-terminally.”

We don’t know how long Ben was without oxygen or blood flow either; we can only make guesses, albeit educated ones. I had heard 10 minutes, but I don’t remember the source of that tidbit. I do have a little bit of helpful information, however, about Ben’s experience.

APGAR scores are given at one minute and five minutes after birth. If baby is struggling, a ten-minute score is also given. It measures color, breathing, heart rate, activity and reflexes. Ben was 0/4/7, which means after one minute he failed every category and his condition was bleak. But, to have gotten to a 7 after 10 minutes was especially encouraging to his doctors.

Another assessment are umbilical cord gas levels, which are usually only tested under certain circumstances and right after birth. Ben’s were taken within a minute. This was new to me, and I may get some of this wrong. Basically, blood is drawn from the umbilical vein, the blood coming from the placenta, and also from the umbilical arteries, the blood coming from the fetus. The values paint a picture of health status before and during birth.

Ben’s numbers were bad; the blood recirculating back from his body showed he had needed oxygen, wasn’t getting it, and his body had compensated. This created high amounts of acid in his blood, called fetal acidosis. A cord PH of 6.7 doesn’t mean a lot to me, but those were his numbers, and they were pretty grim, apparently. The actual breakdown of the different components were more favorable, said the neonatologist, because they somehow showed Ben had experienced a rapid deceleration, or that he hadn’t been down as long as once thought.

The cord gas values, low APGARs and his presentation at birth meant Ben had suffered a hypoxic event. His diagnosis: Hypoxic Ischemic Encephalopathy (HIE), meaning without oxygen, restricting blood flow, affecting the brain. It occurs in only 2-3 out of 1,000 births, and uterine rupture is just one of many causes.

Upon admission to NICU, Ben was immediately started on hypothermia therapy for 72 hours, the standard treatment for HIE when available, and a fentaynl drip for the pain of being kept at a low body temperature. His nurse during cooling was Nurse T, and she’s right up there with Nurse M. She has remained in touch and even texted us on Ben’s due date, thanking God that she had gotten to witness a miracle, Ben’s life.

Cooling therapy was more new territory for Drew and me. It’s most effective if initiated within six hours of birth; Ben was cooled within 50 minutes. The cooling works to prevent re-injury. When the blood that the body had shunted off during stress begins to re-pump throughout the organs and extremities, even more problems can occur. The cooling slows that process down and halts further damage.

While he was cooled, Ben was extubated off the ventilator on his third day of life. The cooling slowed down most of his systems, which meant a pretty low heart rate, so it was hard to tell if his behavior was due to his possible brain damage, due to his meds, due to the cooling or all of the above.

Those first three days were rough. It’s hard to watch videos of him from that time, because I can see why we were worried—he was very still, subdued and hardly opened his eyes. He would also shiver sometimes, which was sad.

Ben showed no visible signs of seizures either on the cooling mat or during rewarming. He had a few hiccups during rewarming, but by 4:30 a.m. on April 1, he was back to typical temperature. Ben had hundreds of people praying for him, and he did quite well.

It was comical, because almost as soon as he was off the cooling mat, he had to switch to the warming mat for his jaundice levels. This is common in a preterm baby, and at this point I tend to forget Ben was preterm. Still, almost four weeks early is no small thing. Even so, we were finally able to hold him for the first time ever on April Fool’s Day.

Holding Ben for the first time ever, on April 1, 2019

In NICU, he received IV nutrition and lipids for many days before we tried bottles. He had to show nurses he had a sucking reflex and a gag reflex. He was on various medications, including antibiotics and a loading dose of anti-seizure drugs upon admission. He also had a tube draining my blood and other ick from his system, which he had sadly inhaled during the rupture. Mama didn’t like that. He had lines in his umbilical cord vein, umbilical cord artery and mouth that made things like blood draws and temperature taking easier on him.

Drainage tube circled, UAC and UVC visible

Ben also received a myriad of tests and screenings. When you experience acute trauma at birth, your body is quite out of whack. So we looked at lots of pieces to his puzzle: heart, liver, kidneys, thyroid, brain. We retested many things because some numbers were off, due to the insult. His pediatrician is still retesting a few.

Ben had EEGs, brain ultrasounds and brain MRIs. Many of those looked at one particular picture in time, and on the macro level, not on a cellular level. The tests can predict the future to a degree, but as the neonatologist said, Sometimes you just have to grow these babies and find out. We feel good about the big picture, but we can’t predict it perfectly.

Still, with the exception of a few glips on an EEG that could possibly be attributed to trauma and not injury—after all, for a while his brain was “mad”—Ben’s results have been absolutely encouraging. His MRI was “normal.” But because of his HIE diagnosis, Ben automatically was referred to the state’s early intervention program, which will follow him monthly for up to three years, with possible physical and occupational therapy, and watch for any delays or issues.

When discharged from NICU 11 days after birth, Ben was put on a prophylactic dose of phenobarbital for seizures, and time will tell if he’ll continue to be followed by his neurologist. The meds turn his milk pink. So, this little boy with three sisters keeps pinking up, in more ways than one!

Ben is going to be a wait-and-see baby, toddler and child. More new concepts that I finally came to understand and accept. Mama will just have to deal with it.

We are so grateful for Ben’s good outlook and, ultimately, for his life. For now, we continue an interesting and challenging education.

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