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 :)

GJ tube is...

..IN!!

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..

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!

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.

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!

Back in the big city :/

Well we've had an eventful few days to say the least..

In my last blog, I was excited that our doc discontinued some of Clays meds: diuril, sodium chloride, and potassium chloride. We had to have a BMP drawn this past Wednesday to make sure his electrolyte levels weren't missing the supplements.
Well, Wednesday evening we got the call to come to the ER at UK because his sodium, potassium and chloride levels were really, really low. And they told us to expect to stay a few days while they lined everything out.

So we got to the ER Wednesday evening and was admitted into PICU that night. Thankfully, Clay was pretty much asymptomatic of all of his diagnoses: hyponatremia, hypochloremia, hypokalemia..except for sweating like crazy and being a little more restless. It's a wonder it wasnt much worse, considering how low his electrolyte levels were.

So we spent two nights in PICU while they supplemented him with sodium and potassium and had labs drawn every 6 hours to check the levels in his blood..they didn't want to make the levels rise too fast b/c that could be even more serious.
Can just I say how bad it SUCKS to watch your baby get poked with a needle every 6 hours?! And this wasn't a little poke, it was fishing every time. His little vessels are very hard to find b/c he's so chubby, so almost every time he had to be stuck 2-3 times until they found a good one. It was pitiful!

On Friday, once all the levels were relatively normal, we got the go ahead to be discharged home, giving sodium supplements every 8 hours. And with a follow-up appointment and blood work on Monday.

While we were packing up to head home, I noticed his heart rate being a little higher than usual--up around 170s, where it's usually 150s-160s..but he was cranky and tired, so I thought maybe that was causing it.
No sooner than we got home, he started getting a fever and his heart rate got even higher to 180s. I gave him some Tylenol and it made him feel better.
He slept good overnight but woke up working really hard to breathe, on like 3 liters of oxygen (usually on .5-1 liter), secretions thick, a fever, high heart rate, and a rash on his arms. I gave him more Tylenol and it brought down his fever and heart rate but Eric and I decided to bring him back over to the ER, just to make sure an infection (or worse) wasn't causing all the hoopla.

So we brought him back--and once we got to the ER, the show was on. A rectal temp of 104, heart rate was 205, on 6 liters of oxygen..baby was not feeling good. They immediately have a bolus of fluids and Motrin and Tylenol and shot an X-ray too.
Thankfully, within the hour, he was feeling a million times better. And the doctor said X-rays look good--whew.

So we were admitted to PICU again yesterday afternoon, and now, here we set.

They've done all kinds of cultures to check for viruses and infections, and are giving him some antibiotics too, just to be safe. He's felt a lot better since we got here in the PICU. No more fevers or high heart rates.

The plan is to give him another 24 hours of antibiotics then we may go home tomorrow..

Poor baby bug has had a rough week, but once all of this is lined out, he's liable to feel like a brand new man.

Y'all send some prayers and good vibes to Clay-bug.. We wanna go back home to the hills and enjoy some Fall weather!!

Love & peace to you all!