Valen’s Story

Valen was born prematurely 2 months early, he had an NG tube for 34 days. Then that was taken from him and said good enough he’s drinking “enough” of his bottles, 2 days later he was discharged home. A few months pass, we’re at the doctor constantly, our baby that was “good enough” is now requiring oxygen 24/7. Obviously, something again.. wasn’t quite right, so we kept pushing to find a doctor to listen not to find a quick bandaid. Fast forward to Valen’s first birthday ⏩ We knew, something wasn’t normal with Valen’s way of drinking his bottles. He quickly tired, quit breathing, turned blue, held his breath or cried while eating. The doctors kept telling us this is normal, babies do this. He viewed having to eat as a job and an inconvenience. Valen began losing weight and quickly started eating less and less. On Halloween 2023, Valen had lost nearly 3 pounds in just a few weeks. We drove him to the children’s hospital because he had not eaten all day long and the day prior just one bottle. (If you know Valen you know he’s never eaten food consistently so he relied solely on breastmilk or formula for nutrition) They decided since he was having wet diapers they’d discharge him because he must be hydrated somehow. I demanded they admit him or they transfer him to an outside hospital who would. Ultimately, they decided I was right. Which is where we spent the next 7 days. Valen then got an increase of oxygen, on day 2 they placed an NG tube (same tube he had immediately after birth) the goal was to have him eating by the time we’d go home. This was not the case, by day 5 he still hadn’t so much of even held a bottle. On night 5, it was decided for Valens best interests we’d go home with the NG tube. But we still didn’t have answers. I pushed day 6. We had a swallow study! We found out Valen was aspirating on everything that went down! 😮 This explained SO much (and so little all the same) we began giving Valen thickened so still his formula, but the consistency of honey. He was doing 25% better but still very inconsistent. Which was still progress! We still had limited answers, but during our hosptial admission we met an amazing Dr. He really seemed to care. He is actually, the only doctor in the region that can operate on a specific “congenital defect” but didn’t want us to worry. He gave us a few details, and man were they scary. He requested to do a bronchoscopy. We agreed anything for answers. Prior to the bronchoscopy he asked us should his suspicion be right, could he correct anything he could while Valen was already in surgery. Absolutely yes. During surgery, we got a phone call Valen would be in surgery longer. My heart just sank. I just knew this was the “bad and scary” part of the possibility but he was in wonderful hands. Valen had a Supraglottoplasty, which removes and reshapes the tissues in your upper larynx. This is recommended for children with laryngomalacia — a condition in which floppy or malformed tissues block the airway. We already had suspicions of this. But did not know the severity of it until the bronchoscopy. After surgery, Valens doctor comes to talk to us. I remember his words I don’t know I’ll ever forget. “Well. I really wanted to be wrong man I just think he is the cutest kid Valen has, a type 2ish laryngeal cleft.” I don’t remember anything but the room spinning and everything feeling numb from there. I just wanted to with my baby. He says “I just need to…” So, we find out anytime Valen cries… or drinks his airway shuts off >50% which explains why he turned blue, always was tired… (remember we were always told this was just normal and babies do this, being brushed off) By December 2023, Valen needs his oxygen significantly less! Who knew?! He didn’t need it all along past his nicu admission, he just needed us to advocate fiercely, he needed answers, he deserved answers. He didn’t deserve to be brushed off. Fast forward ⏩ January he is still relying heavily on the ng tube. February we meet with a surgeon and schedule g tube surgery which felt like such a failure to our boy. Like everything we did, everything we were fighting for, for him we were doing it all wrong. March! Surgery Month March 11th, Valen gets his g tube! And wow. was that life changing. “At the time, it felt like a feeding tube was the beginning of the end… but now I know better. It was the beginning of LIVING!” We got our baby back, our happy baby. Our running baby. Our giggly, smiling, goofy boy. Present, Valen is THRIVING. He is the happiest, best boy. He’s the best brother. He’s the best baby. He’s everything we could’ve ever asked for. I’ll always advocate, to the ends of the earth for him. As long as I’m living. 🤟🏼🫁🖤 #ValenArloStrong