Friday, February 26, 2016

Meconium aspiration is a crappy start to life

The day my son was born was the worst day of my life. It was his worst day, too.

Perhaps I should explain.

In the NICU four days after meconium aspiration syndromeLet's start with the crap, shall we? Literally. Meconium is a baby's first poop, made up of the things a fetus ingests while still in the womb: amniotic fluid, mucus, epithelial cells, water, and so on. It's not pleasant to look at, to the say the least, typically dark green or brown or dirty yellow. Moreover, meconium is thick and sticky, like a glue paste.

Imagine breathing all that in and coating your lungs with it. Tiny baby lungs, which have just begun to be put to use outside the womb, are delicate enough. Breathing in mouthfuls of meconium i.e., aspirating it renders the lungs almost immobile. Even if the lungs could move, little or no oxygen can make it through the thick meconium goo into the baby's circulation.

It's not uncommon for a fetus to poop in utero. Estimates for the number of babies who do so range from 1 in 20, to as many as 1 in 5. Generally, the meconium doesn't cause any problem. Of all the babies who do poop in utero, only about 5% end up with some kind of meconium aspiration.

And then there are the cases like Jackson. The ones who have severe meconium aspiration syndrome.

Y'know how nearly everybody has those sweet pictures of a tired mother cradling her newborn child, all smiles and love and happiness? Not us. Jackson was whisked straight over to a waiting team of nurses who immediately assessed him for signs of meconium aspiration. They were ready for him because during labor he had briefly registered fetal distress, sending all the machines into a tizzy. It lasted less than a minute during the multi-hour labor, but the distress likely was when the meconium appeared.

The nurse team found gobs of meconium in his mouth and throat. They suctioned what they could. But he was barely responsive. His Apgar score, which provides a quick measurement of a baby's health after birth, was a 1 out of 10.

Zero is dead.

Soon after birth, the doctors and nurses placed Jackson on a ventilator. The doctors and nurses explained his prognosis was grim and they gently prepared us for the likelihood he might die. It was a very severe case. However, after some pointed encouragement from me, they set about finding specialists and surgeons who could provide him the best possible care. Within an hour a specially-equipped ambulance arrived and ferried Jackson from our hospital to a neonatal intensive care unit (NICU) at the University of North Carolina. We were heartened by this development.

First day on ECMO, with cannulae running into the right side of neck
First day on ECMO, with cannulae running into his vein and artery at his neck.
At the new hospital, however, we were again told his situation was dire. The resident who first broke this news to me was a newbie, having just started her residency a few days before. She couldn't conceal that she thought Jackson was going to die. The doctors explained Jackson's best chance would be if they could place him on extracorporeal membrane oxygenation (ECMO). Essentially, ECMO is a heart and lung bypass, with machines siphoning Jackson's blood, adding oxygen to it, and reinserting it into his bloodstream. There were surgeons on staff who had performed an ECMO surgery years ago, though not on a newborn. In the span of a couple of hours, they would need to reacquaint themselves with the procedure and then perform it on an hours-old infant.

The ECMO machinery
Jackson was enveloped amidst the ECMO machinery.
Even if they succeeded with placing him on ECMO, his prospects were still tenuous. For several days, technicians would watch him round-the-clock, constantly checking and adjusting the levels of his blood and oxygenation. He was in severe danger of either blood clots or, if the blood got too thin, of strokes. Either could kill him. It was a high-stakes balancing act.

Furthermore, after ECMO, his prospects were likely dim. Assuming he ever came off ECMO and a ventilator, we had no way of knowing how much the oxygen deprivation affected his brain. There was a decent chance he would be a vegetable, or suffer from debilitating deficits. At minimum, he faced a high likelihood of developmental issues or delays.

His ECMO surgery, thank the stars, was a success. The NICU team began its vigil, always with at least one technician in the room monitoring and adjusting the machines.

Day after day, under their watchful eyes, he persisted.

He prospered.

Meanwhile, we hovered. Watched the machines. Stroked the tiny bits of baby skin that were left bare, careful never to shift or move him. Although he wasn't in a coma, he was completely sedated. We nevertheless read books to him, chatted with him (okay, soliloquized), sat in the room all day listening to the whirring machines. We bought coffee and donuts and treats and set them outside his room, openly trying to make Jackson a hub for activity and interest for all the doctors and nurses. For me and Kate, time stopped. The outside world essentially disappeared. His battle became our sole focus. All we could do was watch. We were hopeful but nonetheless fearful about the many unknowns of Jackson's, and our, future.

Off ECMO, now with ventilator and many wires
On the fourth day, he came off ECMO. But he was still on a ventilator.
Less puffy
Less puffy after ECMO, without all the extra fluids.
Many wires for our baby
Can you believe this was progress? At one point I counted more than 50 wires attached to him.
All of this was tough on me. As I said, that first day was the worst day of my life. By the time Jackson was on ECMO, we had been up nearly 48 hours. We were on a roller coaster: the joy of his birth followed by his possible demise. We were told by medical staff multiple times to prepare for his death, only to have a short-lived reprieve. Then, when he was finally stable on ECMO, we faced the prospect of a troubled future.

First family selfie
This was our very first family selfie. It was my own first ever selfie, for that matter.
But I had it easy compared to Kate. She gave birth with no epidural. An hour after birth she was dressed and on her feet, waiting at Jackson's side. An hour later she was in a car headed to another hospital, her newborn tucked away in a special ambulance. She was like the mythical stories of yore, the peasant woman giving birth and then immediately getting back up to work in the fields. Kate met the roller coaster head on, sad but resilient. Although her physical pain paled beside the emotional beating, her sheer endurance was remarkable.

During his first week in the hospital, we couldn't do hardly anything for him. We tried to find ways to stay involved and connected. Since Jackson obviously couldn't breastfeed yet, Kate pumped milk and froze it. And pumped more milk. And more, and more, and more. The hospital could give him a little of it through a tube into his stomach, but Kate ended up producing so much in the first several weeks that ultimately she was able to donate a large amount to a breast milk clinic for use by other needy families.

Kate with Jackson
The only clothing Jackson could wear was socks.
Jackson in sunglasses
He was still sedated, but we decided to accessorize him with shades.
Rockstar Jackson
The NICU loved his progress and called him a "rockstar." We found an appropriate onesie.
First time Jackson could open his eyes
He opened his eyes for the first time on day six.
Finally, by day six, they could reduce Jackson's sedation enough to allow him to wake up and open his eyes. It was the first time he saw the world outside momma's womb, but he couldn't really move or even breathe on his own. Still, what a wonderful feeling for us to finally be able to look into his eyes and smile, as well as to talk and read and laugh to a non-sedated baby.

On day eight, we had our first chance to hold Jackson. In truth, Kate had had thirty seconds to hold him right after he was born and before he was hooked up to machines, but nothing since then. Early on, I had been frightened my child might be born, live, and die while I would never have had a chance to ever hold him. While that fear faded as the days went on, the nurses were sure to give us a chance to hold our baby as soon as it was feasible.

Nurses handing Jackson to me
It took several nurses to get Jackson and all his wires onto my lap.
First time holding Jackson
I could finally hold Jackson! He was still hooked up to a ventilator.
Kate gets to hold Jackson
Kate got her first real chance to hold her baby.
Grandparents admire
Grammar, Nana, and Grampa Bill got to watch but not yet hold him.
Second family selfie
Our second family selfie.
Cyborg baby on standy
Our cyborg baby on standby.
After day eight, the pace of changes and improvement increased mightily. On day nine, following some debate, the NICU team decided to take Jackson off his ventilator. They were taking an aggressive approach with him overall, to which he responded well. Although they weren't certain his lungs were ready to breathe on their own, they decided that if he struggled they could simply reinsert the ventilator. He did struggle immediately, and at one point we heard the machines make the dreaded flatline sound. (For anyone who might have the chance to be present during a family member's medical procedure, I'd strongly advise against it. They offered, we accepted, and I wish we hadn't.) But Jackson's lungs did lurch into use, and he never again needed to be put back on the ventilator.

When he had two solid days of breathing, the NICU team determined that Jackson could graduate from intensive care to the children's wing of the hospital. He still had an oxygen tube in his nose, which gradually was weaned from all day to just at night.

First day off a ventilator
Jackson's first day off the ventilator, gazing at mommy and Grammar.
Our new room in the children's wing of the hospital
Our new room in the children's wing, with bed for mom and dad.
Quiet and peaceful outside the NICU
So much quieter and more restful out of the NICU.
Again with shades
He was a great success story, and drawing admirers. Shades for style.
On mommy's lap
Still some wires attached, but so much more interactive.
Once he was breathing normally, it was time to start breastfeeding. This was more challenging than it would have been had he had a typical post-birth introduction, but all things considered not too big a struggle. By this point Kate was a mass-producer of milk and Jackson was just learning to have an appetite, so she continued to pump large quantities for the milk bank.

We were also now able to take Jackson out of the crib and handle him delicately, but like a typical infant. We now had to do things such as change his diapers, where before the nurses in the NICU handled all those tasks. We could play and take walks around the halls.

Day by day, his breathing and oxygen saturation levels improved. And along with those things his energy and interaction levels boomed, too.

Mom and baby
About to begin a new life challenge: breastfeeding.
Breastfeeding is exhausting
Breastfeeding is exhausting.
Weighed on a gram scale after every feeding
At birth he weighed about 8.5 pounds, but by the time he was out of the NICU he had dropped to around 6 pounds, losing about 30% of his weight in ten days. To make sure he was on track with breastfeeding, we weighed and tracked his gains after every meal.
Free from the oxygen tube
Eventually, he spent most of his day without an oxygen tube in his nose (though with tape on his face).
First nap outside of the crib
Jackson's first nap outside of the crib. Still with oxygen while sleeping, however.
The last few days in the hospital came with a sense of relief. Jackson was improved to the point of nearly being able to go home. Nonetheless, we still had the tedium of waiting around the hospital all day. At night we slept in his room, regularly awakened by nurses' checks as well as by Jackson's oxygen machines, which beeped furiously every time his oxygen saturation (his "sats") dropped below 90%. We slept fitfully.

Darth Vader onesie
Darth Vader and Jackson both had their share of respiratory issues.
As another side effect of his time on ECMO and a ventilator, Jackson lost his voice for a couple of weeks. He would cry (like any other infant), but no sound would come out. He would just silently mouth his distress and shed tears. We rooted for him to regain his voice, though of course who really wants to hear a crying baby? We did. But not too much, dear boy!

Finally, by day 21, Jackson could sleep at night and regularly keep up his oxygen sats. We were able to go home. This was exciting but also a little scary. We were safely cocooned within the hospital, medical staff at the ready if Jackson had any challenges breathing. He was coming home with an oxygen tank and a machine to measure his saturation levels, which ultimately he used at night for nine months. Think it's hard to get a normal baby to sleep peacefully through the night? Try adding wires taped to his face and the beeps of a machine if he shifts or doesn't take a full breath. Leaving the hospital meant losing security and comfort in case of trouble.

In the car seat, ready to go home
At last in the car seat, ready to head home for the very first time.
But of course we wanted and needed to take him home. At last!

By the end of his three weeks in the hospital, Jackson had gone from life-threatening meconium aspiration syndrome to nearly complete health. We had been on the brink of losing him several times, and now had an apparently normal and mostly healthy baby. For awhile we met regularly with a pulmonologist who assessed Jackson's breathing, but he steadily improved to the point where we no longer needed the oxygen tank at any time, though we kept it nearby in case of some unforeseen emergency.

At home with the baby
Finally, home with the bebé.
His developmental milestones were checked regularly, as well. Besides the normal meetings with pediatricians, he was enrolled in a special infant care clinic. Every few months several experts measured whether he was meeting his milestones, and he was on track every time. In fact, by the time he was 20 months he was exceeding the milestones and was actually ahead of the curve. He did so well they eventually told us he no longer needed to have his development tracked.

No one could have predicted this kind of result. At the beginning it wasn't certain if he'd survive, and if he did, the question became what problems would he have. So far, as we approach his fifth birthday, there have been none. At all. Quite simply, an amazing turnaround.

I'm still watchful, and now that he's been thrust into school in England we have more developmental milestones to track.

As next week approaches we're staring down the due date for baby boy #2. I've been reflecting rehashing reliving the nightmare, wondering why I'm willing to go through having another. Jackson's story turned out to have a very happy ending. But what if the new lil' scribbler's path doesn't?

I'm excited and terrified. Rationally, I know there's almost no chance the lil' scribbler will have meconium aspiration. Nor is there much chance we'll have any complications. Nevertheless, I can't banish all my worries. I'm a planner by nature, and I simply have no control or plan that I can exert.

My excitement is inescapably tinged with trepidation.

Deep breaths and embrace the wonder of childbirth. Deep breaths. Deep breaths.

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