Hello, my name is Jordan. On May 7th, my 16-month-old son, Noah Sage, began a fight for his life.

In the past 16 months, we have watched our beautiful, rambunctious, curious son struggle to thrive. Some things we could brush off as a normal variation–all kids do things at a different pace–but as he grew older, it became apparent that something was wrong. He was hitting all his milestones late until he wasn’t hitting them at all. He stopped gaining weight, he stopped growing in height, and he began to lose some of the skills that he’d worked so hard to develop in the first place.

“Well, he is sick a lot,” we told ourselves, noting that he’d been congested non-stop since November 2023, when his twin sisters began attending daycare. Moreover, he’d had five ear infections in as many months, so maybe he had difficulty hearing and needed tubes in his ears.

In February, during an especially bad round of the crud, I noticed that Noah was having pauses in his breathing while asleep. I contacted our doctor’s office but was told that if the pauses didn’t last longer than 10 seconds and he didn’t turn blue, there was nothing to worry about. I put that information in the back of my mind and continued on.

On April 23rd, Noah had his 15-month appointment where I was able to express my concerns once again about his weight and apparent developmental delays. By this point, he hadn’t gained but a few ounces since his 12-month appointment and he didn’t grow any taller. He’d officially fallen off of his growth chart. “Let’s give him another month,” his doctor said, to see if he grew at all, and if not, we’d start working him up for Failure to Thrive (FTT).

I agreed though I couldn’t help but bring up this thing that had been nagging me for months. “I think he has sleep apnea, could that be causing some of his issues?”

So, we left the appointment with a referral to an ENT to talk about putting tubes in his ears and possible sleep apnea, and with a plan to push calorie-dense foods in the hopes that he’d finally grow a little.

Two weeks later Noah was in the PICU.

The week of May 3rd, Noah’s sister Callie contracted a virus that was causing her a significant amount of pain in her mouth and throat. Around that same time, Noah began waking multiple times throughout the night screaming. It felt like it was every twenty minutes. This was a huge change from his usual self; he’s typically a great sleeper, sleeping 12 hours straight through the night. So, concerned, I took him to the doctor. “He has a sore throat,” she said. “He probably has what Callie has.” I took him back home, but again, something was nagging me.

The next several nights were more of the same. He woke again and again and again, all throughout the night, sitting up to scream before flopping over and falling back asleep. Each day I grew a little more worried.

On Sunday, the 5th, while Noah was napping, I noticed that the pauses in his breathing were a lot longer. Every time his chest didn’t rise, I held my breath as well, wondering how in the world this could be considered normal. I recorded a video of him and counted the seconds. 10… 15… I contacted the nurse line of his pediatrician and we were advised to take him to the emergency department.

Perhaps the most ironic part of all of this is that I am a Registered Nurse. I stopped working at the bedside in 2020, but the fact remains that I am a licensed, trained medical professional with experience working in the emergency department. So I knew there was no way the ED was going to take this seriously. When Noah is awake he seems perfect, if not a little snotty and congested all the time. When we got there they checked his oxygen levels: 100% on room air. But he was awake. I asked them if they wanted to check while he was asleep. They did not. They sent us home. Their discharge diagnosis was “runny nose.”

On Monday, Noah was sleepy. He’d spent another night screaming. Another night probably having these pauses. He wasn’t well. I considered bringing him back to the doctor. But what were they going to do? I’d been told twice already that he was fine. After nap time Noah seemed better so we held on for another day.

On Tuesday, May 7th, 2024, Noah stopped breathing in my arms. He turned completely grey. My heart stopped. I dropped his head in my lap, my hands shaking as I prepared to place him on the firm ground and begin giving him rescue breaths. If he didn’t breathe again, I would have to start CPR. “30 chest compressions, two fingers, 1.5 inches in depth, two breaths, repeat,” I reminded myself.

After what seemed like forever, he sucked in one pitiful breath after another. Slowly, his color returned. But this time, I had been recording. I finally had the proof they claimed I needed.

He slept all morning. Afraid to take him back to the ER only to be turned away, I brought him to his pediatrician in the hopes that we could be directly admitted. She was shocked by his condition. She tried to direct admit us. They denied him. “Send him to the ENT first,” they said. So I drove my son to the ENT. The ENT took one look at him and said he would direct admit him to the PICU (pediatric intensive care unit). They denied him. “Send him to the ED,” they said. So I took him to the main emergency department for our “local” hospital (one hour away—we live in the sticks) and they took one look at him and called a pediatric rapid response.

I heard the one phrase every nurse hopes they never, ever, have to hear about one of their loved ones, let alone their child.

One nurse scooped Noah up and took off down the hall, the other leaned into me with her hand resting softly on my back. “Okay Mama,” she said, “we’re going to have a lot of friends joining us.”

I couldn’t breathe. I navigated the stroller through the crowded ER hallway like I was pushing through molasses. “When they start coding him,” I thought, “tell them you’re a nurse. Tell them you’re a nurse so they explain it all to you. Tell them you’ll understand. Tell them you want to know everything that’s happening. When they start coding him, tell them you’re a nurse—” I repeated it a hundred times in the fifteen seconds it took us to reach the resuscitation bay, a large bright white room lined with half-open drawers spilling with IV-start kits and lab tubes and gauze, trauma kits and splints and gowns to catch the blood spatter from trauma patients. It was nearly identical to the ones I used to work in. Twenty focused healthcare professionals crowded around a gurney with my tiny baby in the middle of it, his eyes wide, his little fingers curled at his lips in the ASL sign for eat.

It was so absurd I couldn’t help but let out a hysterical chuckle as everyone turned to look at me. I needed to give a rapid report, something I’d done countless times for my patients. But when it came to my own child, I was lost. My brain was a constant buzz, the thoughts cycling so fast it was impossible to hold on to one. “I’m sorry,” I said, “I’m a bit overwhelmed.”

But I found the words, I pulled out the video, “Well, that’s terrifying,” the ER doc said. Well, no sh*t Sherlock, I wanted to scream. But I only nodded. I could only plead that they help us this time. Please.

Noah was admitted to the PICU. He was started on high-flow helium and oxygen, given IV steroids and nasal steroids and fluids and the doctors buzzed in and out listening to him over and over. His oxygen was dropping with every pause. Into the 70’s. The 60’s. They looked at the photo. “His oxygen was probably in the 40’s here,” they said.

It all made sense. Noah was small and developmentally delayed because his body was working so hard just to keep him alive while he slept, that he had nothing left over to grow or learn.

Noah has obstructive sleep apnea and needs surgery to remove his tonsils and adenoids, but he’s too young and too little to have his tonsils removed, and he tested positive for rhinovirus which meant that he was too close to a viral infection to safely undergo general anesthesia. We would need to wait 4-6 weeks after his acute infection.

So we nursed him back from the virus which took a huge toll on him. He lost over a pound and really struggled to heal. But we did it. The doctors wanted to see what he was like at baseline. They didn’t want to send him home on oxygen. But unfortunately, Noah’s baseline is severe. He was discharged on 1-2L of O2 at night and during naps.

I was scared because there was still something nagging at me. I felt like it would be impossible to keep him home safely, but at that point, his surgery wouldn’t happen for weeks. He couldn’t stay in the hospital. I knew that it would be a risk to take him home to live with his sisters who bring him a new bug every few weeks from school. But we didn’t have a choice. So we went home.

We didn’t make it a week before the 2L of oxygen was no longer sufficient. He was dropping into the 70’s even on 3L.

For many reasons, a few days later we found a way to get him to Chapel Hill. He’s been admitted ever since (about two weeks at the point of this posting). Since this most recent admission, we have learned a lot about little Noah. He has obstructive sleep apnea but also some level of a central apnea component in addition to low tone. There is concern for a genetic condition so he’s being tested for that.

Additionally, he is a sort of medical mystery which has made him quite popular here. His condition has only worsened over time. His desaturations now regularly reach the 40’s and 50’s every few seconds while he’s asleep. This is an extremely severe case that is incongruent with the typical presentation of sleep apnea and the distance from the rhinovirus which should have led to gradual improvement.

Because of this, he requires a full-face BIPAP at night to breathe because no other device is sufficient and his blood becomes acidic from retaining carbon dioxide in his sleep. If he continues to worsen, the only other solution would be to place a tracheostomy so that he could have a tube deliver air below his obstructions without intubating him and putting him into a medically induced coma. I pray every day that it doesn’t come to that.

But, there is no way to safely send toddlers home on this type of breathing machine. So we were gearing up to stay in the hospital until June 17th when he would have had his surgery. What is typically a fairly routine procedure has become a lot more complicated due to the severity of his airway and condition. There is a possibility that he will be on a ventilator for a few days post-op.

Unfortunately, two days ago Noah spiked a fever. They tested him and he’s somehow contracted a new, different respiratory virus since being admitted. This is devastating news. Not only has this continued to worsen his condition, but the surgery will now be postponed another 6 weeks.

That means 6 more weeks in the hospital, not counting the time it takes for him to reach a point of being able to safely go home after surgery.

I never imagined writing something like this. Asking for something like this. But the past month of hospitalizations has taken such a toll on my family. My husband is working day and night to single-handedly run our seasonal business, my mom and mother-in-law have been traveling for hours and hours to switch off watching my twins who are sad and confused about where Mommy and Noah went, and I have been with Noah every step of the way.

But 6 more weeks of this is truly a near-impossible task. Between the medical costs, parking, tolls driving back and forth, business losses from my husband needing to be everywhere at once, additional child care for my twins, gas, food, and lodging while we wait for a spot to open up at the Ronald McDonald House, the financial toll on us has been, and will be, astronomical.

Additionally, it is still our fervent hope that Noah will somehow be able to be discharged for a while in the interim before surgery, if this happens, we will not be able to stay at the Ronald McDonald house (if we ever get a spot), and we will need to find a temporary rental to keep Noah close to the hospital in case of an emergency.

We are extremely blessed to have such supportive friends and family who have given countless hours of their time to help us, but the road has only just begun. Similarly, we are blessed in the fact that Noah will be okay. This is a test, but it is one we can pass with flying colors.

So, that’s our story. And this is our little Noah Sage. A beautiful, sweet, strong little boy who we would do anything for. That we are doing everything for.

I set the goal at 5k dollars in anticipation of all the costs to come in addition to the credit card debt we’ve already begun to accumulate due to the last month, but any amount will help us tremendously.

Please donate if you can, and if you can’t, please share this. And please know that we are eternally grateful, even if all you do is read this and bear witness our story.

If you pray or believe in vibes or energy or anything really, please send out positive healing thoughts to our baby and to our family who is juggling this in addition to a sick grandparent in need of a heart transplant. We are struggling, but we are strong and this test has only reaffirmed the strength of our love and support for one another.

If you’ve read this far, thank you.

I will provide updates as they come, and as we get closer to a potential surgery date.

Stay safe Xx

Jordan and family