The Waiting Game

Today was supposed to be Walter's surgery date. The thing we've been waiting and planning for since his birth. This looming surgery that had already been postponed once due to doctors’ schedules. This 6-8 hour surgery where they cut Walter from ear to ear and reconstruct his skull to relieve the pressure on his brain that's being cause by his metopic Craniosynostosis.

That surgery? It got postponed. Again.

This time it was complications on our end. Both babies got sick last week. Really sick. Walter got it first. A slight cough. I didn't think much of it then, but 24 hours later when he couldn't breathe through his nose and I could hear a rattling in his lungs start to develop, I took them both to the ER. It was a long day of swabs, rectal temps, sticking them in tiny plastic tubes for X-rays and waiting.

So. Much. Waiting.

Five hours later, they came back with their diagnosis: RSV. Respiratory syncytial virus (RSV) which is basically a bad head cold but can be particularly dangerous for babies, especially those who were born prematurely. They also thought the X-rays showed signs of pneumonia. We were given antibiotics and sent home with a list of things to do: saline flushes, snot sucking, running humidifiers and many temperature checks.

These kids are troopers and I'm pleased to report they made a full recovery all while staying home with us. Often babies with RSV are admitted to the hospital. Our awesome pediatrician fought for us to go home instead of having to stay at the hospital. He also double checked the X-rays and said he did not see any signs of pneumonia – critical for Walter, since kids who've had pneumonia can't have major surgery for at least 8 weeks after the illness, per Children's Hospital guidelines.

So, today we are home snuggling. Grandma Krieg flew in from Wisconsin to help with Mabel and Lloyd while Walter and I were supposed to be away for five nights. But because the surgery was postponed last-minute and her flight was already booked, she's here doing all my laundry and being Super Grandma and I'm basking in around-the-clock adult interaction and having an extra set of helping hands.

It's looking like surgery will now happen March 7th, assuming all the schedules and stars align. The silver lining here is that this allowed us time to get Walter in for a sleep study. Slumber party at Children's Hospital on February 23rd. Woot woot!

The bad news is the waiting. Waiting is hard. Those two weeks waiting to find out if I was pregnant every single cycle. Followed by those two weeks between appointments whilst pregnant, desperate for an ultrasound update on how they were growing. Followed by a 24-day wait to take my family home from the NICU. Followed by this never-ending wait for surgery. I'm tired of waiting. I'm ready to start the healing. But I don't have a medical degree, so the call isn't mine to make.

I do know at Walter's last appointment, he was showing some signs of pressure on the brain. We were at his eye exam, our third appointment of the day. We had just seen the neurologist and the plastic surgeon and everyone is throwing out big words and there is no way to absorb it all, so I just nod my head and try not to cry. But that all changed when the ophthalmologist said "Walter is suffering from Strabismus."


Thanks to theatre and my specific love and experience in one particular show called “The 25th Annual Putnam County Spelling Bee,” I not only know what that word means, but I can also spell it AND use it in a sentence.

"In the schoolyard Billy protested that he wasn't cockeyed. 'I suffer from Strabismus,' Billy said, whereupon the bullies beat him harder."

BOOM! Theatre taught me something. I'm not sure the doctor was as impressed as I was as I blurted out the definition and used it in a sentence. In fact, she may have been horrified. But nothing was gonna bring me down. I actually knew something in the vast world of unknowns. Amidst this sea of neurosurgeons, I KNEW SOMETHING! ME!!!

Strabismus, as defined by Merriam-Webster, is the inability of one eye to attain binocular vision with the other because of imbalance of the muscles of the eyeball — called also squint; compare cross-eye

This condition will only worsen as the pressure increases. But there is hope it will correct itself after the surgery. Also, Walter has it in both eyes which is apparently better than just one. I forget why. I wasn't listening at that point. I was still celebrating my knowledge of the word Strabismus.

So that's where we are at. Back to waiting. Hoping for surgery on March 7th. In the meantime, I'm going to try and celebrate life's little victories. Like the fact that both babies are sitting up unassisted, reaching for me and did I mention I can spell STRABISMUS?!?!