My How the Fears Change...

Yes. You read that correctly, fears. Sure, the years change and that’s inevitable. But as the years change, so have our fears. 

Four years ago, we brought our 4 lb 10 oz boy home from the hospital. Our fears were huge that day, as we were going from 24/7 observation, with medical professionals on watch and ready to intervene if need be, to home. Alone. With a heart monitor, which we both loved and hated. 

{Photo of a tiny Wyatt, in a car seat that looks ten sizes too big, with smiling parents on either side.}

The next year, we had just brought our guy home a few weeks before with a feeding tube. New fears surfaced with navigating the feeding tube world, fears about his potential sleep apnea, which was being treated with O2. So our guy has a few more medical devices. I think we might have wished that year we were just dealing with a heart monitor. Oh. We also added a hearing aid that year, too. (Thank goodness for photos, or I likely wouldn’t remember the details...) 

{Photo of Wyatt, in black and white, with a smirk on his face. His face has tiger stickers being used to hold his oxygen nasal cannula in place. He’s wearing a headband hearing aid.}

The following year, 2017, was much of a blur. That’s the year we spent a whole lot of time at the Hop. Our lives revolved around ER visits, blue spells, hospital trips, ICU stays, and specialist appointments. Oh and lots of tests. That year, we feared a trach was on the horizon. I remember New Year’s Eve of that year spending lots of time wishing for no trach and some “normalcy” in our lives. (Lori of now laughs about that thought... normalcy. Ha! Hadn’t Wyatt already proven that idea to be a farce?!)

{Photo of Wyatt, in black and white, giggling while his mom steals a kiss}

The fears last year seem to be much of a blur, as we were riding the high of Wyatt learning to sit independently. We had watched our guy grow even more, learn some new skills, spend some time in the hospital, and I think a lot of laughs along the way. That year, we remained in fear of the trach, but we also feared him starting school. Our medical team was very concerned about him being exposed to so many germs and we lived in fear of viral infections, knowing they could put us in the hospital. 

This year, the fears seem eerily different. They stem from a more developmental standpoint. The fears about his medical concerns are still very real, as his seizures haven’t been completely solved and he constantly changes the game on us, but there’s also a confidence, almost a comfort of knowing we can tackle things. 

Today as I’m typing this (maybe through tear stained eyes, I’ll never tell...), the fears are about his growing independence. As he’s climbing up the foam stairs and laughing and clapping when he reaches the couch, I fear him falling. As he pulls the dishes out of my cupboards, I fear things breaking (and having to drill child locks into my brand new cupboards!) on him. I fear as he grows more independent, he will learn his limitations. Which is heart breaking as a mom. One day he will know he’s different. And while we as parents will do whatever it takes to keep working towards full independence, what if he tires of the hard work? 

Fear is a funny beast. It’s consuming, it’s empowering. It’s real. 

Here’s to an amazing and incredible 2020. The last decade has been amazing for our family and we know the next one will be just as fantastic (with a few less hospital visits, please!). 

{video of Wyatt chatting away}

On The Eve of Your Birthday...

On the eve of your birthday, I can’t help but think how different this one feels. I think I say this every year. 

{Photo of Wyatt, smirking while laying in bed. His shirt says, “A little bit awesome” but you can only see part of it.}

As I lay here typing these words, I hear the same sounds I hear each night. The sounds of his oxygen concentrator, his crib aquarium, and the random pulse ox alarm. While these sounds bring a feeling of familiarity, comfort, and sigh of relief, I can’t help but feel a bit different tonight. 

Last year I wrote 

this about Wyatt’s birthday eve. Tonight I still have mixed emotions, but I also have even more excitement than I did last year. Even though this year has been very scary. We had more ambulance rides than I care to count, more doctors scratching their heads unsure of where to begin with treatment, but also we have had a lot of really great times too. 

Tonight we watched him climb up the stairs with minimal support, we held his hands as he took steps down the hallway, and we laughed together while he touched the pages in the book we read.

{Black and white photo of Wyatt laying on his side in his crib, his thumb on his cheek and hand in front of his face, before his biPAP mask was placed}

I am sad that I tucked in my three year old and tomorrow I’ll tuck in a four year old. But I think I am also eager to see what four brings. 

Bring on FOUR! 

Dentist, Pediatrician, Pulm, Oh My!

Wyatt has had a busy week so far. 

A 12 hour car ride with one little hiccup, a great dentist visit, a trip to the pediatrician for an infected toe (I can’t make this stuff up), and a fantastic trip to the pulmonologist. 

{photo of Wyatt in his car seat, rocking his pajamas, with his leg hanging over the side of the car seat in full on relax-mode}

The 12 hour car ride from Michigan involved a little nap that turned exciting when Wyatt’s pulse ox alarmed letting us know that he was not breathing so well. A quick pull off on the side of the PA turnpike & a fast application of bipap turned that around quickly only to wake him up and turn him into a bear. The next stop showed us that his pulse ox probe was shifted while he was playing with it and wasn’t actually reading correctly. Oops. 

The dentist visit that was riddled with anxiety for mom went smoothly thanks to a patient dentist and a cooperative kid. Phew. 

Pediatrician visit was due to the pesky pulse ox sensor that broke down his skin, causing a small infection. Nothing a round of antibiotics can’t fix, just annoying to have a leaky toe infection cause a lot of drama. 

And a trip to the pulomonologist rounded out our trifecta of appointments this week. Pulmonologist was pleased with his lungs, shocked to see him standing, and ready to remove BiPAP as an emergency intervention when he has his seizures (before they were diagnosed as seizures, this was the prescribed intervention given his history of turning blue and the original hypothesis that these were lung related). This is HUGE for us as it gives us one less piece of equipment to travel with and creates a bit more freedom. This kid is constantly plugged into medical equipment, making us look like a mobile ICU wherever we go. Sure, he still has a lot of technology to lug around but this is definitely a good thing. Don’t worry, he will still have constant monitoring with pulse ox so we will know if breathing is an issue or if he’s having a seizure. 

{photo of Wyatt, dressed in his orange for Unity Day. His shirt reads, “Choose Kind” with text and ASL finger spelling. He’s reaching into his Dino backpack to pull out all the items for fun.}

We hope your week has been as awesome as ours and you’re choosing kindness always.