Holy smokes, we made it a year...one year ago today, we were bringing Clay home to the hills for the very first time.
Can you say proud? 'Cause that's what I am. I have kept my baby alive, and I'd even venture to say thriving, at home, with a ventilator, oxygen and a feeding tube. Yes, yes, yessssssssssssss, I'm proud.
I guess it's normal coping behavior to 'put the blinders on', so to speak, when you're faced with adversity. At least that's what I do...and that's what I feel like I've been doing for the past 2 years. I've focused on the positives, looking ahead to the light at the end of the tunnel. Always grateful for another day, but praying for a better one to follow.
When I first learned I was pregnant with Clay, I decided to keep a journal and write letters to him. I was 7 weeks pregnant when I wrote the first letter, having no idea if he was a boy or a girl, and absolutely ZERO idea he would be born without a diaphragm. Heck, I had never even heard of CDH ever in my life... Until June 13, 2011. That's the day Clay was diagnosed with Congenital Diaphragmatic Hernia, and that's the day I put on those blinders. Looking back now, those following 20 weeks of pregnancy were some of the most fearful; the uncertainty that comes with the CDH diagnosis is the absolute worst. But with my blinders on, I would seek out the stories of the most mild cases of CDH & told myself that was how Clay's would be...we'd come home a couple of weeks after birth with a healthy baby.
But as you all know, that wasn't in the plan.
Clay was so sick when he was born. Thinking back to his first couple of weeks of life, I'd say some people thought I was delirious at times and not realizing the severity of the situation. But I did, I just had my blinders on...I chose faith instead of fear. He had to get better because the alternative was not an option. One day, I'd be bringing my baby home.
And 8 months later, we did. What a sweet, sweet day that was.
Still, bringing him home with a ventilator, oxygen and a feeding tube is not how I pictured our homecoming to be. With my blinders on, I've focused on the day Clay would no longer need mechanical assistance. One day, it will happen. All he needs is time and lots of love.
Good thing we've got lots of both up here in the hills.
As I sit here writing this, Clay is scooting around all over the house--no ventilator attached. You see, at our pulmonology appointment last week, we were given the OK to discontinue his oxygen during the day (which is completely awesome in itself--that's one less thing tying us down!). We were given instructions to wean his PEEP setting on his ventilator from 7 to 5, then if he tolerates, wean his Pressure Support setting from 12 to 10, then if he tolerates, start doing trials off the ventilator again. Thank the good Lord, he has tolerated all of those changes very well. We started doing trial-offs on Monday and he is doing great. Our 30 minute trial off turned into a 2 hour one, because he was not about to let us tether him to his vent again. I will hook him up to the pulse oximeter machine every little bit to check his oxygen saturation levels. And they're great. No oxygen, no ventilator, satting 94-97. Someone pinch me.
I'm starting to peek around those blinders and catch a glimpse of what our lives will be like sans ventilator. And it's a beautiful thing.
We still have a ways to go until Clay is completely tube free, but we are well on our way.
I want to share with y'all a little bit of the letter I wrote to Clay on the day we found out about his CDH diagnosis, over two years ago...
It sounds like CDH is a really serious problem, but there is no doubt in my mind that you're a fighter. I've prayed from the beginning that you'll be a strong one--and I don't believe He's gonna let us down. You may get off to a rocky start, but I just know you'll make it through & have a great story to impress the ladies with one day ;) ...You have no idea how much I love you already. I'm scared to death, I'm not gonna lie...but I'm gonna have a positive attitude & pray so much. And so are so many others. We can do this little guy. Let's show 'em how strong we are & kick this CDH thing right in the ass!!!!!
And we are doing just that, my friends.
And just in case you want to reminisce with me on that beautiful day we brought Clayton Cash home, click on the links below to check out the three videos my wonderfully talented friend, Dustin Stevenson, at Dustin Stevenson Photography made for us.
Lots of love & blessings to you all, beautiful people <3