Friday, December 4, 2015

You know you're a heart mom...

…if blue popsicles freak you out.

 ...when you can explain the human heart in more medically-termed detail than a step-down nurse can. 

… when you know what a step-down nurse is.

…when you can reconnect the pulse-ox monitor on your child without having to wait for the nurse to do it. 

…when you know which unit at the hospital has the good coffee (hint: it’s not in the cafeteria).

…when you get a knot in your stomach when someone describes your child as an “angel.” 

…when your co-workers (who have been employed longer than you) ask for help understanding company insurance benefits. 

…when you learn that doctor’s orders are really just recommendations.  

Originally posted on The Wilde Heart blog, 5/4/2015.

Tuesday, April 1, 2014

Eight days.

 Can I start last month all over? Can I play catch up? Is that allowed?

I think it is. I'm doing it even if it's not.

8 days.

8 days in the hospital that followed 2 scary, stressful weekend days at home. I sat by his side, counted his breaths, watched his retractions. I counted the number of times he vomited, and how many ounces he was taking in. By the end of the day Sunday I knew we had to go to the ER. What followed was 8 days in the hospital. Watching his heart rate speed up and slow. Begging silently for his respirations to drop to a lower number. Watching his oxygen saturation numbers go up and down like treacherous waves on a rocky shore.

1 liter of oxygen. 2......5! Back down to 3. 2.....not ready, 4!

How many ounces of juice did he drink? If we can't him to drink [insert made up number here] ounces we may have to put in an NG tube.

Those 8 days were consumed with numbers, from the hour Elliott's next dose of medication was due to the dwindling number of ounces I was trying to pump for my other child. The teeny number of hours (minutes?) I slept. The pounds I lost. Cups of coffee I drank.

The number of times I looked up at this screen... who's counting, really?

I think any parent finds themselves ruled by numbers when it comes to their child, but having a child with a heart condition makes you that much more aware of it. There have been times my entire being revolved around those numbers on that screen, like it was the most intense, engaging soap opera you've ever seen. The night we finally saw these numbers, 99 percent saturation at a half liter of oxygen, I jumped for joy and made three phone calls. I probably slept a good five hours and smiled two dozen times. And on that eighth day, when I reviewed a 10-page discharge report with the nurse and barreled out of that hospital with five fully-stuffed plastic patient belonging bags and my little boy in my arms, I felt joy. I did nothing for the rest of the day except soak up kisses and snuggles and I didn't even keep a record of them. All I know is there was a lot.

Sunday, March 23, 2014

Approximately 260

260 powerful, life changing and loving days spent with you by our side. Looking back the days feel short and time feels like its swirling around us threatening to sweep up our days faster than we have time to realize they’re gone. I used to think of time as the enemy in the days following our understanding of your diagnosis. They felt long. Hours felt like days and days felt like months. I was racing to the day when I could meet you wishing time would just fast forward. But in the days leading up to your surgeries I wanted nothing more than for time to slow down. Please God just slow down. I would beg, Just one more hour... just one more day.
I’ve learned to not mourn the days of the past, I’ve learned to not race backwards grabbing at time I wish I had back because that only takes away from the time I’ve been given with you now. And I am so thankful that I’ve been entrusted with 260 days with you. You see, I’ll only ever be given today. I can’t change yesterday and tomorrow is never promised. When I begin to think too far into the future overwhelming myself with the thought of more surgeries and what those days look like I’m robbing myself of the joy I could be experiencing with you now. I begin to create imaginary horrific scenario’s in my mind when I try and take on more than today, but when I realize all I’m being asked to handle is today I begin to settle back down. Time has been nothing more than a miracle for us. Time has allowed me to grow, time has allowed for YOU to grow and heal, time has allowed me to store away precious memories with you in my mind and while some may be reaching for those moments back I’m happy to say I’ve ever had that time at all. In 260 days you’ve changed me, you’ve made me become better; become stronger, more compassionate and patient. Thank you, sweet boy.