Super Axel

A TinySuperhero’s story from a Super Mom’s perspective:

We were blessed with our miracle baby, Super Axel, in November 2017. He is a special needs child, and we wouldn’t change a thing.

Super Axel is diagnosed with Dandy-Walker Malformation, Hydrocephalus, profound hearing loss, imperforate anus, spinal and anal abnormalities.

During our 22 week anatomy ultrasound, they found Hydro and Dandy-Walker. Other challenges were later identified including lack of anal dimple and spinal abnormalities.

Before we had Axel, aside from the main diagnoses, we had nothing but questions. The doctors couldn’t even tell us if he would be able to swallow or breathe, let alone any other smaller things! (FYI- he CAN do both, breath and swallow!)

My husband and I spent 20 weeks in terror.  We prayed our baby would just be okay. I spent many days in bed, unable to move for sheer sadness. We longed to just hold him.

Super Axel spent his first 31 days in the NICU. At 7.8lbs he was the brute of the floor!  Everyone just loved our perfect little man! Super Axel braved a colostomy at 3 days old, a feeding g-tube at 9 days old, brain surgery for his shunt at 22 days old, creation of his anus at 6 months old, and vesicostomy at 6.5 months old.

One of the hardest parts of our journey has been the waiting with each procedure; unable to do anything as we watch him be wheeled away for surgery..

His profound hearing loss has maybe had the biggest impact on me as a mom. With everything else he has to go through, it isn’t the worst thing, but with each failed hearing tests my heart broke.  He couldn’t hear me trying to soothe him, talking or singing to him. No matter that I have adjusted my “plans” and thinking, or that I love my baby so much it hurts, I still get teary-eyed when I think about him sitting in silence. I could bawl right this very second.

Today, we know that he loves our vibrations.  We still talk and sing to him and know he loves it. (Side note, he will be getting cochlear implants at 1 year old, and it literally makes me cry to think of him hearing us.)

This boy might be little, but he is a BIG fighter! His superpowers include his sweetness, his calm, and how interested he is in everything around him. And his hair, can that be one!?

His Dandy-Walker automatically means that he will have motor skill delays. It may also means that he could be mentally challenged. (among a host of other obstacles my sweet boy could face). Motor skills are tricky things to learn! When he was about 4 months old he found out his hands fit perfectly in his mouth, and they never left! Keeping his clothes dry and clean can be a challenge! Can anyone else facing similar challenges relate? When his colostomy bag fails and spreads poop all over his belly or his vesicostomy pad slips down, and he pees everywhere like a fountain!

Feeding him can get a little tricky too. We have a feeding pump, and there is a whole slew of accessories we must take with us everywhere we go.  You just NEVER know when the poop bag will pop!

Lately he has started working to build his neck muscles and head control! He wants to SEE everything soooo badly! He is also working on grasping and bringing toys to himself and learning to laugh. He has started working on baby food. He eats about a teaspoon each time! We are working on a lot of things, and he is making great progress.

Most days, Super Axel spends his time being the cutest, sweetest thing in town and revels in the attention that he gets! He is happy to cuddle when sleepy time is near, but loves to be in his comfy chair or on the floor, rolling to his belly!

Super Axel, we love you so much, and we are extremely lucky to call you a TinySuperheroes Squad member. ❤️⚡️⭐️

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