Understanding Laryngomalacia: What You Need to Know About Our Journey With Archie.

🌟 This has got to be the hardest blog I’ve written, and with any luck, it’ll be the hardest one I ever have to write. Sitting here, reliving all these memories, it’s like the nightmares come flooding back. I could honestly write a whole book 📖 on Understanding Laryngomalacia and

our journey with Archie—maybe I will one day! But for now, here’s an overview. And yes, I say overviewbecause that’s exactly what it is. I don't think it’s possible to put into words just how tough the past nearly three years have been—for us and especially for Archie. It’s been a rollercoaster 🎢 of health challenges, hospital visits 🏥, sleepless nights 🌙, and endless worry. There’s so much more I could say, especially about feeding 🍽️ and communication 🗣️, which I’ll cover in more detail in my next blogs. Trust me, there’s just too much to write in one go! Hats off 🎩 to anyone going through this with their baby, toddler, or child who has health difficulties. It’s hard, it’s exhausting 💤, and it can feel incredibly lonely at times, but we keep going. We have to. And Archie? Well, he’s a little warrior 🦁, through and through.

🌈 The Quietest Baby in the Hospital

When Archie was born, he was the quietest baby in the hospital, hardly making a peep. We brought him home 🏡 on day three, thrilled to finally start life as a family. On day four, the midwife came to check on us. I remember it so vividly. Archie had this adorable little hum when he slept 😴, and everyone said it sounded like he was the most content baby ever. He just hummed along, snuggled up, completely oblivious to the world 🌍. But then the midwife paused, her expression changing. She didn’t think it was cute. “That’s not right,” she said. And that’s when the calm I’d been holding onto started to crumble.

🚑 Our First Trip to A&E

It was terrifying 😰, not knowing what was wrong with my baby. The midwife told us to head straight to A&E, reassuring me that Archie would be seen immediately since he was only four days old. This was still during the COVID era 🦠, though, so Jay wasn’t allowed in with me. Ridiculous, right? I had barely recovered from what was, to put it mildly, a horrific birth 😣, and now I was dragging myself through A&E alone, holding my baby, and just praying 🙏 that everything would be okay. We waited for seven hours ⏳. Seven. Long. Hours. They tucked us into a little corridor, Archie squeaking 🦕 away in my arms. I hadn’t brought enough milk 🍼, thinking we’d be in and out, but how wrong I was. I had to beg for some to keep my baby fed. And forget eating or drinking anything myself—I couldn’t even use the bathroom 🚻 because there was nowhere for Archie to go. The whole experience was awful. When we were finally seen, they barely checked his breathing, focusing more on his jaundice. I remember thinking, “Oh, he’s just got a good tan!”But that wasn’t the real issue. We were sent on our way, but deep down, I knew something wasn’t right.

😖 The Squeak That Never Stopped

Over the next few days, things got worse. Archie’s breathing became rapid, and he started squeaking with every breath. It was terrifying 😨. We practically moved into the GP’s office, going every single day for a week. I was convinced my baby was going to stop breathing. Eventually, they diagnosed him with laryngomalacia, but no one had actually looked at his throat to confirm it. It was just this constant fear hanging over us, never knowing if he was okay. The only slightly comforting thing was that if he was squeaking, we knew he was breathing 💨. I’ll never forget the sound 🎶. It was loud, constant, and relentless. We got used to it in some ways, but by 2 a.m., when we were utterly exhausted 😩, that squeak became something close to torture. In and out, in and out, it was like a tiny metronome of anxiety ticking away every moment ⏰. Those first three months were the hardest of my life, and honestly, I’ve blocked a lot of it out. We barely left the house 🏠, and I was terrified to see anyone in case they had so much as a sniffle 🤧. The doctors had warned us that even a mild cold could send Archie straight to the hospital because of his breathing issues.

🩺 The First “Real” A&E Visit

The first time Archie had croup, I thought we’d been thrown into another loop with his laryngomalacia, but this time it was different. His cough was sharp and barking, like a little seal 🦭 in distress, and his chest pulled in with each breath. After what was 50 GP appointments 📅, we had our first proper trip to A&E. Archie had caught a cold 🤒, and at 1 a.m., I woke to the sound of barking—croup. His little throat was so inflamed, and he was struggling to breathe. The doctors had always warned us not to drive him ourselves if his breathing got bad, just in case he stopped breathing in the car 🚗, so we called an ambulance 🚑. Those hours waiting for the ambulance were some of the longest of my life. Jay and I were pacing, holding Archie, crying 😢, terrified. His breathing was getting worse, his tiny stomach pulling further and further in as he fought for air. By 3 a.m., we couldn’t wait any longer. We rushed him to the hospital ourselves, terrified 😱 but knowing we had to do something.

Once we arrived, the hospital was brilliant 🌟. They looked after him, and finally, we saw a consultant who referred us to a pediatrician. We were finally under the care we needed, but it had taken so long to get to that point. The relief I felt was immense, but so was the exhaustion 💤. Every 3 to 4 weeks for six months, we'd go through this nightmare. Watching him struggle to breathe, knowing his airway was compromised, was gut-wrenching 💔.

⏳ When Time Stood Still: Our First Experience with Febrile Seizures

But nothing could have prepared me for the first febrile seizure 😱. It was the middle of the night, and like any other, Archie woke up crying 😢. I carried him to the spare room, which was pitch black. I felt a tremble in my arms but couldn’t tell if it was just me shaking from exhaustion or if Archie was. Then, as he sat up, he started dry heaving. Panic surged ⚡. I rushed him into his room where the red light gently glowed, and that’s when I saw it—his little body trembling 😔, stiff arms and legs, shaking uncontrollably. My heart dropped 💔.

I screamed for Jay 😰. But Archie didn’t even feel hot. That’s what threw me—his usual fever signs weren’t there. I passed him to Jay, who managed to soothe him back to sleep while I made the call to 999 📞. The operator was calm, and the ambulance arrived in what felt like seconds—just four minutes. We stripped him down to check, and there it was, a temperature of 48°C 🌡️. His breathing was so rapid, I felt sick with fear.

Our bags were already packed 🎒, part of the routine by then, so off we went—me in the ambulance with Archie, and Jay following with extra supplies. But this time, the paramedics were calling "Code 1" 🚨. My stomach twisted in knots. They had Archie strapped into his seat, and I couldn't even see him. I reached over to hold his hand, talking to him the whole way 💔. When we arrived, we were taken straight to the resuscitation room 🏥.

I remember looking around at the other patients, realizing the gravity of where we were. Everyone in that room was fighting for their life 😞. I clung to Archie, tears barely held back 😢, and kept asking, “Why are we here? Why are we here?” The paramedics told me his heart rate was dangerously high, and he was at risk of cardiac arrest 💓. The weight of that hit me like a freight train 🚂.

I had to keep him calm, stop him from crying to lower his heart rate. I sang 🎶, rocked him, did everything I could to comfort him. Every minute felt like an hour ⏳, but after two agonizing hours, his heart rate finally started to drop. We were moved to the children's ward 🛏️, and though he was stable, I was a wreck. Sleep was out of the question. I lay there, too terrified 😰 to close my eyes, watching him like a hawk 👀. 💔 The consultant came the next morning and told us that, unfortunately, this might happen again. His body’s way of fighting infection was through these seizures, and there was nothing we could do to stop it. The news hit hard. From that moment, my mind never fully rested. For weeks, I slept right next to Archie, too afraid to be even a few feet away. Eventually, I inched back to my own bed, but that fragile peace didn’t last long. 😔

The second seizure happened during the day. My parents were with us, which helped, but this time was different—Archie was violently sick 🤢. The ambulance 🚑 came, and thankfully, he didn’t need the resuscitation room, but it didn’t make it any less frightening.

Seizures have been some of the hardest moments in our journey with Archie. The memory of the resuscitation ward, feeling so helpless and scared, will stay with me forever. For a moment, I truly thought we might lose him 💔. But we didn’t. He’s still here, our little warrior 🦸‍♂️, fighting through it all. And for that, I’m so thankful 🙏.

💪 The Never-Ending Battle for Archie’s Care

Every appointment felt like a battle ⚔️. Every new concern was another fight. Like I mentioned, it took months to finally get a referral to see a paediatrician, and just when I thought we were getting somewhere, actually securing an appointment was a whole new marathon 🏃‍♀️.

Archie had so many issues—his poor little stomach, the so-called colic, the milk allergy 🥛❌, the reflux, and the trouble swallowing because of his throat. Honestly, it was like trying to juggle a hundred things at once, all while desperately trying to keep my baby comfortable 😣.

The hardest part? Feeling like no one cared 😡. I fought and fought for Archie, but at times it felt like no one believed me. Yes, I was a new mother, and sure, I didn’t really know what I was doing. But come on, when someone is practically banging down your door 🚪 every day saying, “Something isn’t right!” you’d think they’d listen, wouldn’t you?

I had to file so many complaints 📋 with the hospitals because of all the chaos. Archie’s care was split between Worcester Hospital and Birmingham Children’s 🏥, and it felt like everything was falling through the cracks. Missed appointments, no communication between the two hospitals, and so many assumptions from both sides. One doctor would say one thing, and another would completely contradict it. It was exhausting, trying to be his PA on top of everything else 🗂️.

I remember thinking, “This is not what I signed up for.” But I wasn’t going to give up. Archie deserved better, and I was going to fight tooth and nail 🐾 to make sure he got it.

Somehow, through all the tears 😭, frustration, and sleepless nights 🌙, I managed to keep pushing. When you’re a mother, you do whatever it takes, don’t you? Even if that means constantly picking yourself up off the floor after every single knock-back, you just keep going. Because you know your little one is worth every single bit of it ❤️.

🥛 The Feeding Battle: Navigating Swallowing Issues and Silent Reflux

The feeding situation with Archie? Honestly, it was a nightmare 😓. I look back at videos now and think, “How did we survive that?” It's still traumatic to watch. I’ll dive deeper into all the feeding issues we had because, trust me, it was so much more than just his laryngomalacia.

The swallowing, though—oh my word! It was horrendous 😖. Archie couldn’t swallow properly, and it was heartbreaking 💔 to see. We ended up with thickened milk and reflux meds to help, but the silent reflux was brutal 🔥. You’d look at him, and he’d be in so much pain from that awful burning, but there’d be no loud screaming—just discomfort you couldn’t hear but could feel in the pit of your stomach 🤐.

Cue the endless burping battle. Seriously, we’re talking 45 minutes to an hour ⏳ just to get him to burp. I tried every trick in the book—patting, rubbing, lifting his little legs. You name it, we tried it 🍼. But by the time we’d finally managed to get a decent burp out, he’d have taken in more air just from breathing! It was like a never-ending cycle 🔄.

I can’t even count how many bottles and teats we tried—at least 12 different bottles and probably 50 different teats. I’m not exaggerating when I say we spent a small fortune 💸.

⏳ Milestones on Hold: How Illnesses Impacted Archie’s Development

Archie’s early years have been full of challenges, especially when it came to hitting those all-important milestones 📅. For a solid three months, Archie didn’t even go to nursery 😷. And not just that—he didn’t move much either. Three months of being practically bed-bound was awful 😞. People would say, “Oh, it’s just nursery bugs, all kids get them!” But for Archie, a simple cold wasn’t just a cold 🦠. Every virus that came his way would get stuck on his floppy larynx, making it twice as severe and twice as hard to shift.

The delays in his development—especially his communication—became more noticeable 🗣️, and as a mum, that was tough to watch 😢. The febrile seizures started, and that hit me hard. The anxiety of waiting for the next one was overwhelming 😓.

I handed in my resignation. But on a positive note, it led me to where I am now—creating “Read, Play, Create” 📚🎨. It’s been a whirlwind, but I’m excited about this new chapter, and I wouldn’t change it for the world 🌍.

👶 So, Here We Are—Archie’s Almost 3!

Is the battle over? Not by a long shot. Archie has had almost 200 appointments in his little life, and it feels like we’re still constantly in and out of hospitals 🏥. He’s continued to get croup a lot, but thankfully, those steroids are an absolute godsend 💉. By our fourth visit, the hospital knew us by name and would happily give us the steroids—and a few extras, just in case 💊.

So, you’re probably wondering—what about his squeak? Well, it disappeared. Gradually, and then all of a sudden, we realized one day, wait, where has it gone? First, it disappeared at night 🌙. He only does the occasional little squeak now, usually when he’s running or gets a cold 🤧.

Archie’s health journey isn’t over ⚠️. He still has stomach issues, chronic ear infections 👂, throat infections, and any illness knocks him down like nothing else. But my anxiety is less now because I know his breathing is better 🧘‍♀️. Although, whenever I hear that little squeak, my stomach tightens, the nausea kicks in, and it all comes flooding back—those early days of fear and helplessness 💭.

I’ll always be proud of Archie, my little warrior 🦖, squeak or no squeak ❤️.

 For more on our journey and Read, Play, Create - Head over to the website: www.readplaycreate.com or Follow our page on facebook: www.facebook.com/102741359124059