It’s been exactly one year since we were a family of six outside of hospital walls living the life I wanted us to live. That night, we took everyone, including Garrin, to Applebee’s to celebrate Lucy’s 8th birthday, one of our very few outings with him other than visits to his pediatrician. We sat in […]
2019. Just wow.
This time last year, we were ringing in the new year with hope and excitement. Just weeks into 2019, we said our goodbyes to the hospital that had become our home away from home and our newfound family of doctors and nurses. We drove away from the hospital feeling like first-time parents all over again. […]
Those Damn Lungs
It seems like an eternity since we had our beautiful son at home with us, since we actually really felt like a family of six. I worry some days that I took those weeks for granted by thinking that we had years to spend together. When I walk through my house, seeing Garrin’s baby things […]
Another Whirlwind
The last ten days have been a whirlwind. While rocking the home vent on his very first attempt, Garrin got an ear infection. True to form, his only symptom was a dramatic increase in oxygen which prompted a septic workup and the return of the hospital vent. After a short 36-hour break and a burst […]
No Guarantees
This week was tough. Garrin’s CO2 level on Monday was no better than it had been prior to the tracheostomy. In fact, it was worse than some of the results we had seen with CPAP and nasal RAM cannula. In addition to the lousy blood gas, my sweet boy was working harder to breathe and […]
Testing Our Courage
It has been more than a week since Garrin underwent his baby makeover. We struggled this week – downright struggled – to deal with his tearful, soundless cries. We knew it was coming, and we knew it would be hard, but we didn’t know it would be this hard. Garrin has always been an even-tempered […]
Deafening Silence
There is so much silence in my life right now. There are no kids for me to wake up in the morning. There are no tussles for me to break up. There is no prodding necessary to get everyone out the door on time. It’s just me and the TV that’s still on from the […]
Sh*t is Getting Real
Well, the trach doll and the g-tube button doll showed up in Garrin’s room today, and surgery has been scheduled for Friday. Sh*t is getting real. Other than to snap a couple photos of the two dolls, I have barely been able to look at them. The respiratory therapists and nurses have offered to go […]
Advice
We all know it: Getting parenting advice can be the worst. I have received quite a bit of the “in one ear, out the other” kind of advice over the years. Whether it’s diapering, pets, or sleeping arrangements, everyone’s got an opinion. Don’t worry, that’s not what I’m trying to pedal. Instead, here are two […]
