The Incredible Story of Sonny Jules

A year after my first ultrasound that flipped our world upside down, I’m finally ready to share the story of Sonny Jules. I don’t feel as though I owe this to anyone but myself. Writing is so therapeutic to me, as if typing the words that have burdened my soul for the last year could possibly heal the brokenness I’ve felt over and over again. That if I could tell his story, maybe, just maybe, I can be an inspiration to other families who feel as though their heart and lives have been shattered by the impactful words of their doctors. So here, in my most vulnerable moment, begging my heart and soul for closure..I give you the story of Sonny Jules.

It was a beautiful day at the end of August. Not because of the shining sun, or the way the clouds floated carefree above us in the light blue sky, but because it was finally the day that Zach and I would see our baby for the first time. We had waited eleven long weeks in giddy anticipation to finally catch a glimpse of baby Poynter. We could tell the ultrasound tech was checked out for the day as she zoomed into the tiny fetus on the screen, but that didn’t matter to us, because this was our baby, our entire world, and our hearts soared with excitement. We stared at the pictures she had printed for us, and sent them to our family and friends as we waited to meet my doctor.

With a masked face and empty eyes, she strolled into the room and introduced herself. Shortly after our formal introductions, she asked the one question that changed everything. I can still feel the way the words rang in my ears, and the sinking, panicked feeling it left in my heart. “Did the tech tell you about the fluid?”

“Fluid?” Zach and I both asked in unison, as we looked at each other in utter confusion. “Oh,” she continued, “we found extra fluid in your baby’s head, so, not the best news, and I’m going to be referring you to a specialist that I want you to see within the next month.” The words rolled so casually off her tongue, as if she were reciting the weather forecast to us rather than dropping terrifying news into our laps.

The rest of the appointment still feels blurry to me in all honesty. “How would we tell our moms? Should we even still announce our news on social media today?” I cried to Zach when we were finally alone together, driving away from the miserable appointment, but unknowingly taking our first steps into the most traumatizing journey we would ever face together.

By the time December rolled around, we were a different couple entirely. In the months following that first appointment, we had gone back and forth between my OB and the specialist at least seven times. We spent hours upon hours in silence as the wand danced across my stomach, praying that maybe this would be the appointment where they said everything was fine. But it never was. We would be taken to an empty room as our specialist told us the worst case scenario, time and time again. “We still don’t know how this could affect your baby’s brain development. He may not even make it past 26 weeks in all honesty. Stillbirth is a huge possibility.” The box of Kleenex on the table could wipe away my tears, but the stain on my heart was permanent. We begged extensive blood testing to give us some answers, or at least a reason, but those never told us anything that the doctors weren’t already saying.

Right before Christmas, we finally had our eight hour day at Riley. My mom was able to go with us, and for that I was so grateful. Even after an extensive MRI and ultrasound, they didn’t offer any answers or scenarios that hadn’t already been engraved into our souls. They confirmed what the specialist had believed, that the brain malformation present was formed from Dandy Walker Syndrome, a form of Hydrocephalus. “It’s the quality of life that we’re worried about for your baby.” The words taunted me day in and day out. Many hours were spent laying in bed, sobbing, while Phoebe (our dog) did her best to comfort her mom and lick away the sadness that consumed my face. Zach and I vowed to each other in the hushed, silent moments between tears, that we would give him the best life possible, no matter what that looked like.

A birth plan was made, and as long as the fluid in Sonny’s head didn’t cause too much pressure before I was 37 weeks, a cesarian section would be performed. They said the fluid had made his head too big for any woman to try and push out on their own. The plan after birth was to place a shunt in his head, which drains the excess fluid somewhere into his stomach. Finally, I thought to myself, we have a team of doctors who think that our sweet baby would have a chance to make it past birth. Up until our appointment at Riley, it didn’t sound as though my doctor or specialist believed that would be a possibility.

March 2nd finally arrived, and I had never been more ready for anything in my entire life. If we could just get him here, I thought to myself, then hopefully the hard part would be over.

Looking back, it baffles me to know just how incredibly wrong I was.

The room was cold and sterile, but the masked faces watching me were warm. I stared down and admired my pregnant belly one last time as they tried to find the center of my spine. After six attempts, all feeling below my arms had disappeared.

I heard music floating around me as Zach entered the room.

After what felt like nearly an hour, we finally heard my surgeon, a bright and friendly man (I had only met two out of the ten doctors that could have possibly been my surgeon that day, so I definitely wasn’t expecting it to be a man! Honestly though, I wouldn’t have had it any other way.) yell to the team of at least ten other nurses in the room, “Baby’s out!”

“Why don’t I hear him crying?” I turned to the anesthesiologist with tears in my eyes, and Zach squeezed my hand that was entwined with his. “The nurse will be over here soon.” His sympathetic eyes responded, swiftly dodging my question.

And then, after what felt like an eternity, but was probably around thirty seconds, I heard the most beautiful, high-pitched cry. I locked eyes with my husband while Paul McCartney sang “With A Little Luck” in beautiful harmony to the sweet sound of Sonny’s first breath.

Forty eight hours into Sonny’s earth-side arrival, his shunt surgery had been completed and was a success. Within that same time frame, we had learned that he was visually impaired in his right eye. There was also a build up of blood behind it that was believed to be causing pressure. Surgery wasn’t needed immediately, but it would be necessary if the blood didn’t dissolve on its own within the next month.

I had been cleared to return home, but our entire life was still at Riley Children’s Hospital. The pain of walking away from my baby in his lonely hospital room ripped my heart into a thousand pieces. It would be night one of seventy five that I spent looking into his empty nursery with tears rolling down my face.

Sonny was six days old when a random neurologist greeted us in his room. She was a short woman, probably in her early fifties, with dirty blonde hair that fell just below her ears. We had asked her how his shunt was looking on his most recent MRI. “Actually”, she began as she pulled up the notes on her computer, “we found something pretty concerning. It doesn’t look as though the part of the brain that tells you to breathe is fully developed, if it’s even there at all.” It was a good thing I was sitting in my wheelchair, or I probably would have fallen to the floor. “You might want to think long and hard about how long you’d want to see your child on a ventilator. Some parents never want to put their child through that.”

My mind was reeling with a thousand questions. I don’t even remember what Zach had said in response. All I could do was sob. A ventilator?! What did she mean? Surely something was wrong. Would we ever be able to take him home? Would we have to make the worst possible decision you can make as a parent? He wasn’t even one week old, how could this be happening?

A care conference was scheduled for nine days later, and those were the worst nine days of my entire life. During that time, we met with more neurologists, a pulmonologist, and the “end of life” representatives at the hospital. When we met with the end of life team, Zach did pretty much all of the talking. I had no strength, no energy, no words to even utter that could free me from this never ending nightmare that consumed my life. He told them that in our care conference, we didn’t want to hear about the worst case scenario, unless it was happening in that moment. He also said that the short haired neurologist was never to come into our room again.

She asked him one simple question in response that felt like a tiny blade chipping away at my heart, one excruciating piece at a time.”Have they talked to y’all about his breathing?”

Those words haunted me down to my core until our care conference. I couldn’t eat, and all I did was sleep in between visits to the hospital. It blew my mind how the doctors and EOL representatives could be so casual about us possibly losing our baby. I was angry, sad, more scared than I’d ever been in my entire life, and on top of it all, I was suicidal. “If anything happens to our baby”, I screamed and cried to Zach standing in our bedroom that night, “then I don’t want to live.”

The day of our care conference had finally arrived. It was on St. Patrick’s Day, and Sonny was only fifteen days old. A day that used to be full of green treats and drinking in my early twenties, now mocked me with the uncertainty of our baby’s future.

Our team of about ten doctors, maybe more, two social workers, and the end of life team were waiting for us in the conference room. The energy in the room felt disturbingly somber, and I begged God in my head one last time for a miracle. I’m not sure Zach and I had ever held hands so tightly.

They began by telling us what they believed to be happening with Sonny’s breathing. “We just don’t see the part of the brain that regulates his breathing. He still breathes on his own, but not enough to exhale all of the carbon dioxide.”

This wasn’t news to us. I had prepared myself for them to say that there was nothing else they could do. But then, to my complete surprise, they offered their own medical miracle.

“The best option moving forward would be to place a tracheostomy tube that would connect to a ventilator, and also give him a feeding tube.” The pulmonologist explained to us in great detail the benefits of a trach and vent, and my heart soared. They hadn’t given up on my baby, they still believed in him, and even though this wasn’t an ideal situation, it was better than every single scenario I had played out in my head in the days leading up to this.

“The only other option”, the short haired, pessimistic neurologist began, “would be to send him home on oxygen to say goodbye to family.” Zach immediately responded with certainty, “I know I speak for Kacey as well when I say that’s not an option.”

They wanted to give us time to think about going through with the surgery, but our minds were already made up. We were never going to give up on this boy, even if that meant putting him on a ventilator that they thought he would need for his entire life. “We don’t see his breathing getting any worse, but we also don’t ever see it improving.” They had told us before the conference was over, but in our minds this finally answered our lingering question that had haunted us for over a week. We knew it would be a long road to taking him home, but just the fact that he would be able to come home with us one day filled our hearts with pure joy.

Fifteen days later, I stood alone as they took Sonny off to surgery. Because of the lingering COVID restrictions in the hospital, the only two people allowed in his room were Zach and myself. He had offered to take the day off work, but I wanted him to save as much PTO as he could for when Sonny would be home. But as I squished myself onto the stiff, blue couch in the corner of the room, I wished for nothing more than to have him or my mom here with me.

Two and a half long and nerve wracking hours passed, and Sonny was back, along with a room full of doctors and nurses. I jumped up to be by my baby’s side. He was supposed to still be sedated, and the plan was to keep him that way for the next week while he healed from surgery, but Sonny Jules was wide awake. I’ll never forget the look he gave me, had I been alone with him, I would have dropped to my knees and lost all control. His eyes looked so scared and betrayed by the one person who was supposed to love him the most, and I felt my heart break as he wrapped his hand around my finger.

The hospital vent that was connected to his trach looked like a large monitor with wheels. I watched the patterns dance on the giant screen as it shouted and beeped, informing us that Sonny was in fact breathing. I watched how it made his chest robotically rise and fall over and over again. Sonny’s lip quivered, and he began to cry. That’s when it really hit me. His voice. Why hadn’t I thought about this? Him and I locked eyes as we silently cried together, realizing that he couldn’t push his tiny voice around the trach. His nurse tried to lift my spirits, but I ran to the corner of the room and sobbed. I had hit my breaking point with this realization, and I couldn’t hold the tears back any longer. I ripped off my mask as I stood there alone, mourning the beautiful sound of my baby’s cry.

From that day forward, the tone of our visits completely shifted. We were no longer there just to bond with Sonny, but to train and learn anything and everything about the trach. There was a full list of cares and procedures we would have to learn and prove that we could do in front of the nurses multiple times to be “checked off” on, in order for him to come home.

By the time we were finally moved to the PICU (pulmonary ICU) at Riley, we had already started our training. “It will be months until he’s home.” The doctors at his care conference had said, but we were determined to finish our training as quickly as possible. Once we completed the trach training, we would then be able to start learning about the ventilator.

It was Sonny’s third day in the PICU when they started trach collar trials. Since he was proving that he could breathe on his own, they wanted to test a few different options that might involve him coming home without the ventilator. The trach collar didn’t breathe for him like the ventilator did, it’s sole purpose was to keep his trach humidified so his secretions were loose. (Trachs pick up “snot boogers” from the lungs like when people without a trach clear their throats, and we do something called suctioning to get those out of the trach. Keeping it humidified prevents the trach from clogging up with secretions, which could cut off his airway and result in an emergency trach change.) Zach and I tried not to get our hopes up, but as the days went by, Sonny Jules kept proving to us and the doctors that he didn’t need the vent. He didn’t like it in all honesty, they would trial the trach collar starting at thirty minutes twice a day and kept increasing the times, until he was on it 24/7. He hated when they would switch him back to the ventilator, and his CO2 was looking good with just the trach collar, so the next step was to wait for a sleep study to be conducted.

In the meantime, the blood behind his eye wasn’t clearing up on its own, so we decided to follow through with surgery to have it drained. Zach took the day off work this time without even asking me, which I was extremely grateful for. The surgery was only supposed to last for about an hour, but after over three long and miserable hours, he was back in his room with us. I felt like the worst mom in the world when we left him alone in his room that night, but we had been there for over twelve hours, and Sonny needed to rest.

Two weeks after Sonny’s eye surgery, a spot finally opened up for him in the sleep lab. Since he wasn’t able to be seen until closer to the weekend, we had prepared ourselves to wait in anxious anticipation until Monday for the results. It was Saturday (the day before Mother’s Day) when I received a call. The number from Riley always comes up the same, so there was no telling if this was the call we were waiting for or not, but my heart skipped a beat as I answered. It was in fact a nurse from the sleep lab with the results. I put her on speaker and grabbed Zach’s arm, unsure of how my body would respond to what she was about to say. “After reviewing the results of Sonny’s sleep study… we see no reason for him to be on a ventilator. He won’t need to be on oxygen either.”

This news was our double rainbow after the most brutal storm of our lives. Our prayers had been answered, and I jumped up and down as tears of joy clung to every inch of my face. (I’m crying again just thinking about the way this news made my heart dance and how it brought my soul back to life.) Being told that my baby didn’t have to be on a ventilator when we thought he would need one his entire life, was the most amazing Mother’s Day gift anyone could have ever given me.

This wonderful news meant that Sonny would be moved out of the PICU and onto the regular Pulmonary floor at Riley. This was the first time in his short life that he wasn’t in an intensive care unit. It also shortened the timeline for taking him home exponentially. Zach and I only had a few more things to be checked off on, we needed to receive our equipment for home, complete a 24 hour “shift” separately at the hospital with Sonny, and then he would be able to come home.

The night before Sonny was scheduled to finally be discharged from the hospital had arrived. I called Sonny’s night nurse and asked for her to please call me if anything happened. They had given him his shots that day and I was nervous that he might be in pain, or spike a fever overnight because of them. Zach and I went out to dinner for the first time in months, and toasted to the end of this exhausting and terrifying chapter of our lives.

May 16th was finally here. After the longest 75 days of our life, we would bring our baby home for the first time ever. I ran ahead of Zach to Sonny’s room while he went to grab a wagon. I had my favorite Starbucks drink in hand and the biggest smile on my face behind my mask, but when I walked into his room, my heart completely dropped.

“What’s going on here?!” I gasped as I stared at the large x-ray machine, demanding an explanation from the radiologist staring back at me. “The doctors ordered an x-ray after rounds this morning,” he stuttered, “we–were you not notified? Did you not give consent for this? Let me call the doctors for you.” My heart burned with rage in my chest. I couldn’t even answer him, I had to get away from this machine and control this overwhelming feeling of anger before I caused a scene. Zach arrived at the doorway with the wagon, and gave me a confused look. “I have no idea what’s going on”, I told him with tears in my eyes, “but the doctors should be here soon.”

Within minutes, two doctors, a male and a female, were with us in the hallway. “He had a low fever last night, and his oxygen dipped into the 80’s, so we want to make sure he doesn’t have RSV, pneumonia, or covid. I don’t think he will be going home with you today, I’m so sorry.” The male doctor looked at us sympathetically. I instantly began crying, and the female doctor put her hand on my arm, trying to comfort me. Her touch made me shudder, and it took all of my energy not to dramatically pull my arm out from her grip.

I was infuriated that we hadn’t received a call once this had been decided. Something Zach and I learned in the earlier days of this hellacious hospital stay was that the nurses and doctors could make or break our whole day there. We had some truly amazing nurses, (and thank you so much Jessica, Chris, Amber, Emily, Mariah, Valerie, Krista Belle, Olivia, Tara, and especially Ellen, if any of you happen to read this. You were our saving grace during those terrible days and for that you have my eternal gratitude.) but we also had some very awful ones, too. So awful that we demanded they never touch Sonny or be in his room ever again. Some of them would use phrases like “well here’s a silver lining”, or, “at least this is some good news amidst everything else going on with him.” I genuinely don’t know if the nurses and doctors truly understand how much of an impact their words can leave on parents who are already traumatized. But something we also learned from every single one of them was that we were Sonny’s advocates and the people who knew him best, so we refused to walk out of the hospital without him that day.

Once all of Sonny’s tests came back negative, we pretty much demanded he come home with us. “We don’t have any medical reason to keep him here,” the male doctor was standing with us at Sonny’s bedside, “but we’d like to keep him for just one more night.” I know to some people, one more night doesn’t sound very long… but for us, it felt like an eternity. After a slightly heated conversation with the doctor, he finally agreed to talk with Sonny’s day nurse and get her advice on the situation.

Two agonizingly long hours later, our short, red-headed nurse with a big personality burst into our room. “Guess who has the discharge papers?!” She handed me the large stack of paperwork as I jumped up and down in giddy excitement. I knew she had advocated like hell for us with the doctor, and I’ll never thank her enough for having so much confidence in Zach and myself. About an hour later, we strolled out of the hospital together as a family, and for the first time ever, our “Baby On Board” bumper sticker was telling the truth.

Since we’ve been home, we have heard nothing but amazing news from his doctors. He has regular appointments at Riley with his team of specialists; physical, occupational and soon to be speech therapists weekly, and a regular pediatrician on top of it all. Leaving the house with him used to terrify me, but it gets a little easier every single time we do. This boy keeps defying the odds and proving his doctors wrong with every little step he takes. There’s a strong possibility that his trach will be gone for good in the not so distant future. It’s amazing how not even six months ago they were telling us he would have the trach and vent his whole life, and now it seems as though the question is “when” Sonny will get his trach out instead of “if” he ever will.

We’ve definitely had some scary moments here and there, but I feel more and more confident with our training every day. Changing his trach weekly without having the comfort of a nurse beside us is definitely stressful, but Sonny is so amazing and always handles it so well. He seems to be getting stronger every single day. They think his feeding tube will be out before he’s two years old, which was also something they said he would need his entire life.

I couldn’t be more proud of our strong baby boy. He has already overcome so much in his short life, and he truly amazes me. If you’re a medical parent reading this, never forget how resilient your child is. Listen to the doctors, but don’t ever give up hope, no matter what they say. Our specialist once said to us “miracles can happen”, and he couldn’t have been more right about that. Because of you, Sonny Jules Poynter, I will always believe in miracles.