Wednesday, June 26, 2013

Choosing faith instead of fear.

Holy smokes, we made it a 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.

Part 1
Part 2
Part 3

Lots of love & blessings to you all, beautiful people <3

Saturday, June 8, 2013

Results are in..

Well, both Clay and Mommy have had our fair share of laughing gas and sedation drugs the past couple weeks. Clay, with his sedation MRI, ECHO and chest X-rays last week, then I had my wisdom teeth pulled yesterday. (Blahhh!)
But since I've been a little laid-up, I figure nows a good time to finally update y'all on the results from Clay's procedures. Thankfully, all came back pretty good!

The chest X-rays showed that things are still where they're suppose to be, which I was relieved to hear because Clay hasn't been tolerating feeds as well lately...but I'll get to that issue in a bit.
Everyone always asks how his lungs look, if they've grown, etc. While the X-rays do show a picture of the lungs, it can't necessarily show how well they are actually functioning. I've come to understand that's why the doctors don't make a big deal about shooting X-rays every time we visit. Unless something is concerning to us, we leave it alone...In fact, this was our first X-ray in 6 months! He is breathing comfortably, even with some recent weans to his ventilator. So we're very happy with that!

The ECHO on his heart showed that things are functioning properly. While pulmonary hypertension can't specifically be measured in the ECHO, they can see how the heart is pumping and can look for indicators that pressures are high, such as having an enlarged right ventricle and having septum flattening. But thankfully, things looked good! This is especially great considering he's been without Sildenafil, which treats PH, for about 6 months now. Now, we can really get to work on weaning the ventilator and oxygen! We have an appointment with pulmonology in a couple weeks. Pray he will have great progress this summer! 

And finally, the MRI showed that Clay does still have some fluid build-up around his brain. The doctor also said his brain is actually a little smaller than normal, but said that both of these things are common in children who have been as chronically ill as Clay. She said it was something they would continue to follow, but nothing they wanted to treat right now. As I've said before, I am not the least bit concerned with his noggin'. He is learning new things everyday and surprises me all the time with his progress! Big head, little brain, whatever, my boy's a very smart cookie and I'm not fretting that the results from the MRI weren't perfect. I'm just thankful it isn't causing us issues! 

And speaking of learning new things, he has been doing so incredible picking up sign language. Omg, it is the cutest thing ever! Our speech therapist is very pleased with his progress too. She is very impressed with his word associations and also how well he does with sensory stimulation. We've been doing fun things like finger painting in pudding, playing in homemade play doh, and playing in rice...She says he is doing exceptional, especially considering how long he was in the hospital. I am so proud of him, I could bust! 

Our physical therapy is still going very well also! He is doing really well standing and is learning to pull himself up, too..He is even taking steps with his little feet and its the sweetest thing ever! (Doing all these things with assistance, of course.)
We went last week to be fitted for ankle braces. PT recommended them because when he stands, he rolls his little ankles in and also hyperextends his knees, so the ankle braces will provide him with more stability and will help his muscles to strengthen in the correct positions. 

The only thing that's been concerning lately is Clay's been having the pukies a lil more, and he's been losing some weight.  He was at 22lbs at the last appointment we had with pulmonary, (he weighed 26lbs at his heaviest, back in November--which was almost considered obese for his age and was a lil concerning b/c carrying around that extra weight can affect his breathing capabilities--so we switched up his feeding regimen to slow him down.) So since the feeding changes back in November, he's slowly lost weight.. Some of which I contributed to him being so much more active nowadays. But the fact his weight was never leveling out and he continued to lose was starting to concern me and was also concerning to our pulmonologist, so we met with the dietician and she recommended taking his feeds to a higher calorie. The good news is that he's been gaining, and is now around 23 lbs. The bad news is that we've had to go back to nearly continuous feeds because if we try to increase the rate, he has major pukies. I'm wondering if it's him adjusting to the higher calorie food, or if it could possibly be related to his slight congestion lately. He's had a lil cough and I've had to suction a lot more lately...and when he pukes, his vomit looks mucous-y (sorry for the visual). Whatever's been going on has thankfully calmed down over the past couple of days, so maybe we're on the mend and can start to increase his rate again--this continuous feeding is for the birds. Y'all send some positive thoughts & prayers for that to be the case! 

Here's a few pics of the latest:

Clay's first swim! As you can tell, he loved it!

Watching the Legend's baseball game!

Look out, Clay's at the wheel!
He sits like this all the's the cutest thing!
Celebrating Uncle Eli's graduation--Clay adores Uncle Eli & can say his name so well!
Doing what he does best--pulling out allllllll of his books :)

Three Miracle Men, reunited: Mason (also born with CDH), Clay, & Hunter (a 23 week preemie). Trach buds!
Gettin our feet wet at the creek!

Sweetest thing. He LOVES throwing rocks in the water!

Playing in pudding with our speech therapist!

Thank you all, again, for your continued prayers and love and support. I don't know how else to say all are the best!

Here's to a happy, healthy summer for everyone! Enjoy!