Tuesday, October 23, 2012

A very thankful Birthday Eve..

I'm so happy to say we made it back home this afternoon!

Clay has done great with feeds into his new GJ tube & seems to be feeling just as fine as frog hair ;)

Me, well, I've just been emotional all evening...

This time last year, I would have never in a million years thought that Clay would spend the first 8 months of his life in the NICU, that he'd go through 8 surgeries, that we'd come home with a trach & a ventilator & a GJ tube...in my hopeful mind, Clay had a 'mild' case of CDH, we were going to be home by Thanksgiving, and after the repair surgery, he'd be a perfectly normal baby.

But knowing now what I didn't know then, I can honestly say that I would not trade a thing.

We've been on all sorts of twists & turns in the first year of this CDH journey...but today, riding home in the back seat next to Clay, embraced by the beautiful colors of autumn, hearing his sleepy breaths echoed by the ventilator, seeing his busy little feet wiggle & roll, feeling complete & safe in Eric's company...today, we were just cruising along...just along for the ride & it's just a feeling I don't ever want to forget.

We came home to a house full of sweet gifts from Clay's birthday bash and I finally got to look through all of the birthday cards from so many of our family & friends. My eyes filled with tears with every sweet note in them. I know Clay is so special to so many, and I just can't express how much that means to me.

Nana & Pappy brought us soup beans & cornbread for supper and helped to get us settled back in, and of course, spoiled a silly little boy rotten. I just don't know what I'd do without them two.

When Clay was ready for bed, I rocked him, and like always, he reached up to rub his little thumb across my eyelashes until he drifted off to sleep. THAT is the absolute sweetest thing ever. THAT is what makes every bit of this past year worth it.

Tomorrow, on Clay's first birthday, take a minute to be thankful for the life & the health you were granted...because those are things that are not guaranteed to us all. I think Clay has shown us that this life is worth living & living well, no matter what ails us! ;)

Thank you all for embracing our family, for supporting us & standing by us through the twists & turns of Clay's first year...and for encouraging me to share our journey.

It's been a good year :)

Monday, October 22, 2012

GJ tube is...


They got it in!!

After two hours of manipulating the tube through the kinks and curls of Clay's messy anatomy, they were able to get the J portion of the GJ tube back into place. Yay!!

But, they're afraid they didn't get in perfect placement...so guess what?! We're here another night :/

We're going to start feeds back soon, and wait for the lil wildcat to wake up from the drugs--which they had to give lots of--They'll shoot another X-ray in the morning and if all looks well, THEN we may get outta here.

Thank you all for the prayers and good vibes today! They mean so much to us <3

Lots of love to you all!

Prayers for the J tube placement today..

We're not sure what time Clay will be going down to X-ray to try to have the J tube put back in, but we're hoping soon!

They'll have to give him some anesthesia to keep him still for the procedure. We're hoping they are successful, if so, we could go home this evening. The last time--back in April or May--when they tried to put the J tube in with X-ray, they were not able to get it in.

So, if they're not successful today, it will be a trip to the OR tomorrow. Which leads to the question of going ahead with the surgery to fix the problem with his stomach...which would mean a more major surgery and longer recovery and longer hospital stay..which would mean being here on his 1st birthday :( booooo.

So, friends, please say a lil prayer they can successfully put in the J tube under X-ray today and we can skip on out of here tonight! That's sure what I'm hoping for..

Saturday, October 20, 2012

A birthday bash & a trip to UK...wouldn't ya know!

Welllllll...eventful day to say the least!

While loading Clay in his carseat to go to the big bash, we accidentally yanked out his GJ tube. After initial panic, Eric and I managed to get a tube back in.. So, we trooped on & partied anyways! Clay is such a good sport.

Now, we're sitting in the ER at UK waiting to be admitted for a couple days...the 'J' part of GJ tubes have to be put back in under fluoroscopy--so we'll be getting some IV fluids until Monday, then we'll have the J tube replaced, them hopefully we'll be outta here! *Knock on wood we don't catch any bugs again!!*

Wouldn't ya know this would happen on a day like today, lol. I'm just thankful it wasn't anything too emergent & we got to enjoy the birthday bash anyways! We had a big turn out, with lots of friends and family & food.
I know one thing, Mr. Clayton Cash sure has some amazing people in his life. And he sure is one loved little boy.

A BIG, BIG 'thank you' to everyone who came and celebrated our special little man. It's been a memorable day, for sure!

Lots of love to you all!

Sunday, October 7, 2012

They say the eyes are the window to the soul...

This was the first time I ever seen Clay's eyes. He was about 4 days old and on ECMO, his poor little face was too puffy to open his left eye.
 This was such a special moment for me. Clay looked and looked at me with that one little eye as I talked to him and cheered him on. 
I felt such a connection with him that day. I could see a sparkle in his eye told me he was alive, and he was not giving up.

Here we are, nearly a year later--eyes still full of sparkle.

 Clay's soul is alive.
And I am so, so thankful.

Monday, October 1, 2012

It's October & I'm feeling reflective..

Since my last post, we've gotten good 'n settled back in at home from our week-long PICU stay. Clay ended up having a touch of pneumonia--which he hasn't totally kicked, but he is feeling much, much better! It has been a set-back, but he's getting better all the time.

I can't believe it is October. In 24 days, our miracle man will be ONE!!!!

We are planning a 'Clayton Cash Birthday Bash' for October 20th, 4pm, at Nana & Pappy's house. Come one, come all! We will be writing support letters for Senate Bill S.3396, the Congenital Diaphragmatic Hernia Research Bill. If you can't come to the Bash, we would still love for you to send in letters! It would be the BEST birthday present for Clay :)
Visit http://www.cherubs-cdh.org/bills/ for more information!

I've been looking back at pictures from this time last year and it's bringing back a flood of emotions..
This time last year was full of nervous, anxious, uncertain excitement. I was wandering around with CCR's line "there's a calm before the storm" repeatedly rolling through my head. Boy, was that the truth.
Even with weekly trips to the doctor for ultrasounds, we still had absolutely NO idea how our CDH journey would unfold.

 We did get lots of cute 'pictures' of baby bug in the womb, though ;)

I've been feeling reflective lately, and I think I'll try to post a special picture/memory every day or two this month, just as a reminder of how far we've come in a year.

Y'all bear with me :)

Love & peace to you all!