Saturday, December 29, 2012

Happy Holidays!

It was a very Merry Christmas here in the hills...so thankful that our sweet boy was home with us to celebrate this year.
I've been such a good boy :)

Clay didn't seem too interested in ripping the paper off the presents or even what was under the wrapping, but he sure was all eyes...just watching all the madness :)

He got to visit with lots of family & he entertained us all with his big cheesy grins. I cannot say it enough, this child is a HAM!

Yep, I'm a HAM! ;)

He doesn't meet a stranger and takes up with anybody. He is the friendliest baby...and the happiest.
Even though we do have a lot of extra 'stuff' to deal with, he really does make it easy on us. We are SO SO blessed.

I'm also thankful we've managed to keep him healthy so far this cold/flu season.. *knock on wood* We've all had our flu vaccines and he's gotten two rounds of his RSV vaccinations, so hopefully we can keep it up!

There's not much new medical stuff to report, we didn't make any changes with his ventilator settings or anything at his last doc appointment. We have an appointment with Dr. Draus, our trusty ol surgeon, on Friday the 4th...we'll be setting a date for the Nissen then.. I dread it :/

We have been trying out the Passy-Muir valve... which is a valve that connects to the vent circuit & forces him to exhale air out of his mouth/nose instead of his trach. The PMV is also supposed to make it easier for him to talk. It is an adjustment for him, as you can imagine. But he does pretty good with it, although he talks a lot more WITHOUT the valve! He's learning to say 'ball' and 'bye-bye' and it's so stinkin' sweet!

He loves looking out our window at the neighbor's horses in the field. And he loves to see our dog too. We're planning to get a puppy in a couple of weeks and I can't wait to see how he reacts to it!

My little Clayton Cash is such a joy. He never cries, but here lately, when he's sleepy, he cries for his mommy. And I can't help but feel so happy. So many times I've wondered if he knows me as his mommy, but I think I can now rest easy :) I know I've got him rotten, but I can't help it!

He is my world <3




The very best Christmas present!


I hope your holidays have been filled with happiness & love and I wish lots of blessings for the New Year.. Bring it on 2013! ;)


XOXOXO!



Saturday, December 8, 2012

Just a lil update...

Figure it's about time for an update, since it's been over a month!

I swear, this child of mine is a CLOWN! He keeps us laughing with his silly faces and little games. He loves to make people laugh. I love it! One of his favorite things to do now is cross his eyes at me. Such a goober!

He's been getting into everything lately. Even though he's not mobile, I still have to keep a very close eye on him! He's discovered the whole 'cause & effect' thing. He'll yank on his feeding tube & watch it shake the med pole. He's yanked on his ventilator circuit too hard & pulled the humidifier chamber off the shelf, which spills water into his circuit, which about drowns him--no good! So we had to bungee cord the humidifier to the shelf so he won't pull it off...the little rascal!

He's made big strides developmentally in the past few months, with no formal therapies, but we had an appointment with the NICU Grad Clinic last week, and they referred us to Physical Therapy & Speech Therapy. We can't get them in-home (one disadvantage of living in the boonies), so we have to travel to an office, but I know it'll be worth it. Even if we just visit them once a month, they can give me things to work with him on at home.

We go see Speech Therapy on Wednesday, the 13th, and I'm really excited--we get to try out a Passy-Muir valve. I'm not totally sure how it works, but it's a valve that will allow Clay to 'talk' with his trach. He already does a good job of making noise around his trach anyways, so I'm sure he'll do great with the new valve. I'm excited at the thought of getting to hear him laugh. I bet we won't be able to get him to hush! ;)

We also see Clay's pulmonologist on Wednesday. Even though it's been 3 months since he caught that nasty pneumonia, we're still feeling the effects of it. He still requiring about 2 liters of oxygen, compared to the 1/2 liter he was on before...and he still works harder if the vent becomes disconnected. So I doubt any changes will be made at his appointment. Which I am okay with, I just want to make it through cold & flu season with no more illnesses. Please say a prayer we can do it! Then maybe this Spring we can start doing trach-collar trials again...

Another thing on our radar: surgery #9 (or is it 10?).. We met with Dr. Draus, our surgeon, a few weeks ago and we talked about going ahead with the surgery to fix his stomach issues. Dr. Draus also recommended going ahead with a Nissen fundoplication, which will help with reflux and keep him from aspirating. Click Here for more info on what a Nissen is, if you're interested.

We're scheduled to meet with Draus again at the beginning of January, and we'll set a date for the surgery at that meeting. It'll probably be another very invasive surgery and another week-or-two-long PICU stay...I'm dreading it, to say the least. But it will be nice to get rid of the J tube & start feeding his stomach. Then we can start working on oral feeds--which I know will be a battle all it's own--but we'll get there eventually!

Y'all say a prayer for my Clay-bug. He's been doing really well and acting like he feels so good. Pray we can keep him like this! We would love to have Christmas with our baby at home this year :)

Lots of love & peace to you all! XOXO!



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...

..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..

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!

Sunday, September 16, 2012

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!

Wednesday, September 5, 2012

Exciting, exciting stuff! :)

I meant to write a blog after our appointments with our pediatric surgeon and cardiologist a couple of weeks ago, but just couldn't find the want-to...but after our appointment with the pulmonologist today, I just have to share what's going on!! EXCITING STUFF!

Our appointments a couple of weeks ago, with Dr. Draus (surgeon) & Dr. Bezold (cardiologist) went well.
We had x-rays done, just make sure everything was still in the (relative) right spot & Draus said things look good. He thought Mr. Clay was looking good and was happy with how he's doing. We've been noticing a little more output from his g-tube lately (which is draining secretions/bile/yucky-looking-brown-stuff out of his stomach)...and Draus didn't seem too concerned with it. He said the fact that the J tube stints open the pylorus muscle in his stomach will cause things to 'back-flow'...so long as it's not looking white & milky, we shouldn't be too concerned. If it ever starts to look milky, the J tube could have snaked around in his intestines & started feeding his stomach, which would be a problem for Dr. Draus to fix under fluoroscopy...but that's just something for us to keep an eye on. Right now, everything is checking out good, and we don't have another appointment with him for 3 months! At our next appointment with him, I expect that we'll talk a little more about the potential Nissen surgery that's on the radar. The Nissen will hopefully fix the problem with his stomach, so that we can eventually feed his stomach instead of his jejunum & then we can work on him eating by mouth. But that's a ways down the road...now we are just happy that he's growing so well, and we'll try not worry about the rest at the moment.

When we visited Dr. Bezold with cardiology, we had an ECHO done to check on Mr. Clay's heart. Everything looks stable there. They're always trying to get a look at his aortic arch, because it was determined at birth that he had a narrow aortic arch...but because of the placement of his heart & the fact that his trach gets in the way, they have a hard time getting pictures of it. So, Dr. Bezold says they just have to go by how he looks clinically--and clinically, he looks fine. His pulses are good, his hands & feet are warm, sounds okay with a stethoscope... So we'll take it! We won't see him for 3 months either.

..Now for the really exciting news!!

Here lately, Eric & I have been feeling like Clay can tolerate some time off the vent...we say that because the vent tubing will come disconnected from his trach sometimes, or when we're changing his clothes we disconnect it ourselves--and we've both been taking our time connecting it back, just to see how Clay handles it--and most of the time, he doesn't seem to notice it at all.

So today, we had an appointment with Dr. Anstead (pulmonologist), and we told him as much...then Dr. Anstead disconnected Clay from the vent for a couple of minutes to see how he tolerated it, and he was totally fine...maybe tugging a slight bit more, but he was just looking around, not seeming to notice.
Sooooooooo...Dr. Anstead has given us the go-ahead to start doing trach-collar trials!! The trach-collar will provide humidity & oxygen only, no pressures or extra breaths or anything from the vent! Anstead recommended we start off doing two 30 minute trials a day, then he left it up to us to increase the amount of time off as we see fit.  Dr. Anstead said to work our way up until he's off the ventilator during the day, but to leave him on the vent while he's asleep or napping.

OMG!! Yayyyyyyyyyyyyyyyyyy!!!!

So we'll wait until our medical supply company brings out the trach-collar, then we'll start doing some trial-offs. I KNOW that Clay will let us know if he doesn't like it, he always has..haha! But I'm optimistic that he'll do great!

Also, Dr. Anstead discontinued a few medicines--diuril, potassium chloride & sodium chloride. And I am ecstatic about that--I drew up meds tonight in no time! But he ordered some blood work for next week, just to make sure all of his electrolyte levels are good without the potassium & sodium. I'm hoping they are just right!!
And we didn't leave to doctor today without a shot :( Clay got his Flu shot, poor fella. He was none too happy about it.. Now the rest of the family needs to get ours! Any sickness like that is probably the biggest threat to our little guy at this point.

And for other news...

We have an evaluation with the First Steps program tomorrow, so hopefully that will get the ball rolling with Physical Therapy & Occupational Therapy & things like that..I'm excited for the help. Clay's gotten a lot stronger since we've been home. He's almost sitting up on his own, but not without that extra hand there. I'm hoping First Steps will give me some good tips & exercises to do with little bug.

We have also started supplementing breast milk with formula. Despite me wanting to try an alternative to formula, I settled. It's hard to go against what the doctors recommend, especially with a baby like Clay. I don't want to do anything that would hurt him! Even though I don't think a homemade formula would hurt him by any means, I was uneasy about the consistency of a homemade formula. Because he's getting fed into his jejunum, it makes things a little more difficult. The tube that goes into his jejunum is really small, so thick liquids aren't recommended for the J-tube. Whenever the day comes that we can feed Clay through his g-tube, I am very eager to try a blenderized diet, but for now we are using Baby's Only Organic Dairy Formula...and Clay seems to have adjusted alright. It took him a week or two to get used to it, which kind of worried me at first...but after reassurance from our super wonderful nurse Alexis & her talks with the NICU dietician, I felt better about it. It makes sense that his digestive system would be a little 'lazy' after digesting breast milk his entire 10 months.. He doesn't poop nearly as often now & it smells so much worse...but we're adjusting! :)

So yeah, that's where we are now... Hoping for trial-off success & starting to think about 1st birthday parties!!! ;)




 And Halloween! ;)


Exciting, exciting stuff, that I feel so blessed to be excited about.



My sweet little miracle <3



Lots of love & peace to you all!!
XOXO
~Hannah

Sunday, August 19, 2012

An update from Clay-land :)

Just a little update to let y'all know that life around the Clay-ICU is going wonderfully!

Clay is now 24lbs and is such a chunk! I cannot believe he we be 10 months old on Friday. I guess it's about time to start planning his 1st birthday bash! ;)

Mr. Clayton Cash is developing quite the personality lately & it cracks me up! He is learning how to work us, that's for sure. Sometimes, if he's napping and I'm in another room & he wakes up and doesn't see mommy around, he'll start coughing...he knows that will make me come running! haha.
And the little monkey loves to play with his feet, especially when there's a glowing red light from the pulse-ox attached. I've learned to just turn the monitor off when he wakes up in the morning--there's no use in hearing that daggone alarm all day. He turns a lovely shade of blue if he's in trouble (which only happens very rarely).
Another thing the ornery boy is doing: he's learning to smack. The little turkey! It makes trach care so much more difficult. He'll look at me so cross sometimes and just swat at my arm, I can't help but smile at his strong willed little self.
Clay seems to have a few more grumpy spells lately, and I think it may be his teeth causing him grief. He's got two top & two bottom teefers through now & he's working on a couple more. I know they're aggravating--my wisdom teeth are coming in & I'm almost tempted to use one of Clay's teething toys...ha!
We are also really enjoying snuggle time these days. The recliner we have set up next to his crib is where we've spent a lot of time lately. I find myself feeling like I should do more developmental/stimulation stuff with him, because we do have a lot of ground to make up, but then I justify our snuggles by thinking about all the time we didn't get to do that while he was in the hospital...And I know I just need to cherish these times instead of worrying about what I should be doing or not doing. I know I'm spoiling him, but I just can't help it! He deserves ever bit of spoilin he can get ;)

Because of the cooler Fall-like temps lately, we've been able to venture outside more. Clay loves it. He just seems so intrigued by the big ol' world. We've taken a few more strolls down our little country road and we've done more front porch sittin'..we've blown bubbles & gave baths..



Scrub-a-dubbin on the porch :)

A stroll with the crew...Clay's sleeping in this pic :)
Checkin' out some foxtail..


Just hangin out...
 
So yeah, things are going well on the home-front. Hopefully within the next couple of weeks, we will have some therapists with the First Steps program come out & help us work on developmental issues, so that will be great for us all.
And we have some appointments at UK this Friday (his 10 month birthday!)...we'll see Dr. Draus, Clay's surgeon, & Dr. Bezold, with cardiology...both are just check-ups, but he'll have xrays & an ECHO done, so be praying for good results. I'll let y'all know how they go!

Much, MUCH love & peace & blessings to you all!

What a little goober! :D

Monday, July 23, 2012

Our new 'normal' :)

We've been home nearly an entire month already! I can hardly believe it...time flies when you're having fun ;)

We've got a pretty good routine down pat now...this momma's a little wore out, but it is SO worth it, to be home & establishing a new 'normal' after 8 months in the hospital.

Clay is an excellent sleeper--sleeps all night and most of the morning, too. I swear, he is the best baby there ever was. He is the silliest little baby I've ever seen. His facial expressions are hilarious...and so are his new dance moves (I'll try to post a video sometime!)...he sings & growls around his trach...he's been chewing on everything...he loves to play peek a boo...and grab his toes...and pull hair... His bright, twinkly eyes don't miss a move and I'm always wondering what's going on in that big ol' noggin of his...he sure acts like he's got it all figured out. I think he's going to be one smart lil guy. He's just so content and never cries--unless he's having a hard time breathing or something--you know, just little things like that, haha.

Between all the upkeep of Clay and the house, I feel like I've been caught in a whirlwind of never ending things to do (which explains my lack of blog posts lately). It is definitely the most exhausting, yet rewarding job I've ever had.

He gets meds at 12 midnight, 6am, 12 noon & 6pm everyday...10 different medications (he doesn't get all 10 every time). Sildenafil, chlorothiazide, sodium chloride, potassium chloride, enalapril, multivitamins, omeprazole, flovent, combivent & a probiotic. I know the times he gets them & the dosages by heart..lol! We draw them up every night, so that they're in the correct dosages for the next day.
 
***Warning: Here comes a spiel on breast milk, so if this kind of stuff grosses you out, ya might want to skip on over it..***
Clay gets 80mL/hour of breast milk continuously 22 hours of the day. He's still getting straight breast milk, not fortified or supplemented at all! I am proud of myself for keeping up with him for this long. Granted, he went for 2 months without being fed at all & I was able to build up a freezer full of milk, but still.. When we were discharged from the NICU, the dietician & lactation nurses told me Clay was the first long-term baby they've EVER known of to be discharged on straight breast milk. I don't usually like to toot my own horn, but *toot toot*!! haha..
Believe me, the pumping is getting OLD. It takes time & dedication & I honestly don't think I would have kept it up this long if it weren't for Eric's encouragement. When I feel like I'm about to give it up, he'll remind me of what it's doing for Clay...and we neither one like the thoughts of formula, especially because breast milk is an option. Eric & I were both breastfed babies & we both have really strong immune systems (I've never even had the chicken pox or strep throat!) so we are both praying that my milk is helping to build Clay's immune system super super strong.
It makes me so proud to look at Clay & see how he's growing--and he is growing! His weight when we were discharged from the hospital nearly 4 weeks ago was 17.7lbs, now he's 20lbs!--it just makes me proud to know that I am doing that. My time & efforts are paying off in ways that we probably don't even know. Because he's getting fed straight into his jejunum, he needs to be fed things that are easy to digest...and from my understanding, breast milk is the easiest thing around for babies to digest. My body is creating something just perfect for Clay to grow and that it is just amazing to me.
My goal is to make it AT LEAST to a year...but I don't think we'll be able to make it on straight breast milk that long. He's taking in nearly 2 liters a day right now! And I'm only producing about half of that...I've been trying to build up my supply but I think it's probably a bit unrealistic to think I can put out a 2 liter of milk everyday. Lord have mercy, that's a lot of milk...
So we'll probably have to start supplementing soon. I'm currently looking into other options besides commercial canned formula. I know that stuff grows happy, healthy babies all the time...we just don't like the thoughts of the highly processed junk ingredients that's involved, especially with Clay's sensitive digestive system. As crazy as it sounds, I've stumbled across a homemade goats milk formula recipe that I am very interested in trying. Of course, we will be consulting our doctors before we jump into anything...but that's just where my mind is now. I mean, I have always wanted a goat or two...may be a good time to get some! Lol.
If any of you mommas that may be reading this have questions about pumping, I can sure try to help ya! Feel free to message me. I don't know a thing about breastfeeding, but I do know how to pump! lol.
***Okay, this ends my spiel :) ***


So besides meds & milk, we empty gastric port secretions, fill up the humidifier chamber with distilled water, suction his trach, do trach care & g-tube care...we also have to change out circuits & tubing & canisters weekly & try to keep things super sanitized & clean...and then we do 'normal' baby stuff, like change diapers, give baths & PLAY! I've also been trying to use cloth diapers, so that's making things a little more messy & makes for an extra load of laundry, but I feel like I'm doing a little bit by not throwing as many diapers in the landfill...those things take like 500 years to decompose! Not to mention, it's much, much cheaper to use cloth...

Being Clay's full time nurse/mommy is a task--but one that I am so so so soooooo thankful to do be doing. I have went into public TWICE since we've been home...both trips to the grocery store! haha. We've had trips to the doctor for check-ups, but that's a task all in itself. I spent yesterday afternoon lounging by my parent's pool, and the sunshine really did me some good. A person can get a tee-bit stir crazy inside these four walls all day. I don't know what I'd do without our awesome family helping out & my super amazing husband. Eric is seriously incredible...I could gush all day, but I know he'd hate it :P ..And his work, Sherwin Williams DSC, has been so understanding and accommodating to us throughout the past 9 months. I feel like it's very rare for a company as big as them to be so personal and caring. Just another way we have been so blessed.

Despite being cooped-up, I am thoroughly enjoying our home. We closed on this house a year ago July 15th..so we lived here for 3 months before Clay came along...I would hardly say this was our home while he was in the NICU. Now I feel like we're really able to enjoy home. I'm loving to be able to cook meals & not eat fast food all the time. But at the rate I'm going, I think I need to steer away from the "food" boards on Pinterest & start looking more at the "fitness" ones, lol!

Another exciting thing: we qualify for in-home nursing care, and we've got a part-time nurse in the works--I think we're gonna love her ;) It's our cousin Alexis! She's been with us from the get-go & knows Clay as well as me & Eric (if not better)...it's SO crazy how things work out. Her help will be so so awesome..me and Eric may even get to take a break outside of the house together! :)

We are blessed beyond measure. I am so thankful for all that we have & for all of you fine folks, still keeping tabs on our little warrior. I'm happy to report our first few weeks at home have been wonderful. I'll try my best to keep yall up-to-date, it's been hard to find a spare minute to sit & do this.. and now look, I've done wrote a book.

See my teefers!! :)

Much love & peace to you all!
XOXOXO

Thursday, July 5, 2012

Clay's 4th of July fun..

Clay started the Fourth of July off with his own fireworks show...and it sure gave me and Eric a good scare! I've talked about the sweaty, frantic fits that Clay throws...the ones that usually mean he's in trouble...well, he had one of those episodes about 6:30 yesterday morning. We suctioned, changed his trach, bumped up his oxygen, tried everything we knew to calm him...but he was highly unhappy to say the least. After a good hour of trying to calm him and doing all that we knew to do, we decided to take him to UK for an x-ray to see if something may be going on.

We turned off his feeds and loaded all of our equipment up and by the time we got him in the car and ready to go, he was smiling again. So that got us thinking maybe it was something to do with his feedings. He's on 22 hours/day of continuous feeds into his jejunum, while his gastric port is draining secretions off of his stomach. We've noticed the drainage off his stomach had more of a brownish-bloody color, which isn't the usual color...And a couple days ago, the drainage looked really milky, so we were thinking maybe his jejunal tube was in a bad spot...which would be something our pediatric surgeon would need to deal with. So we decided to make the trip to Lexington anyways. Whatever was causing Clay's uncomfortableness sure sent him over the edge--and like I said, I've seen those fits before and they usually mean something is not right. They are ZERO fun!

But by the time we got to the emergency room, Clay was really turned on--happy to be in his old stomping grounds, maybe? Of course his girlfriends came to see him down in the ER, so he was really happy to see all of their faces ;) I know the ER doctors thought we were crazy for bringing this happy, wiggly baby to them. But we still wanted an x-ray, even just for our peace of mind--which looked fine, thank God.

Clay got checked out by one of the pediatric surgeons, who reassured us the drainage color wasn't concerning. The brownish-bloody stuff was probably because of the balloon that sits on the inside of his stomach, holding the g-tube in place. Doc said it can rub the lining of his stomach, especially now that he's getting so active, and cause irritation and discomfort. He also reminded us that sometimes kids don't want to eat - which is something I hadn't really thought of. Even though Clay has alllllllllll this medical 'stuff' & special needs, I suppose he can get a regular ol' tummy ache just like any other kiddo. Maybe his tummy was hurting and he didn't feel like having 76mL/hour of milk pumped through it, so he got upset about it & threw a fit, which caused him to get air hungry, which caused him to turn blue & red & purple (remember that firework show, I was talking about?) & he needed more oxygen, which caused me and Eric a good scare. We just have to remember that when Clay gets upset like that, he's going to require more oxygen to get over it & he probably will turn colors and it will probably take a while to recover...his little lungs just can't cope the way most can.

They ended up drawing labs & putting an IV in to give him a bolus of fluids, since he was NPO for about 5 hours. We started his feeds back at 50mL/hour and observed him for a couple hours to make sure he tolerated it okay, and the doc advised us to leave him at 50mL for 24 hours, then slowly work our way back up to 76mL. Then we were out the door and home free!

So I guess you could say our first ER trip was a bit of a fluke...but regardless, I'm glad we made the trip to have him checked out. Although me and Eric have been right by his side the past 8 months & know Clay well, it's going to take some time for us to build up our confidence and know what is an emergency and what is not. I am just so so so thankful it was a false alarm and we were back home the same day.

Aside from the episode yesterday, things have been going great here at home! Thankfully, the transition home has been smooth for Clay. He's such a happy baby...so content and curious. Here's a few pics of us enjoying home life:
Say CHEEESE!
Meeting Uncle B and family for the first time :)
Chillin' with Aunt Kd
Getting a massage from Aunt Pammy..hehe, love his face!
Chillin' with Uncle Eli
Meeting Aunt Amy & girls for the first time :)
Loungin' with Nana Lisa
Going for a stroll with Daddy :)
Watch out! Momma's got the wheel ;)

So happy to be together at home :)


Wednesday, June 27, 2012

Home, sweet home...

I am so very happy to report we are doing well at home!!

We are still trying to get settled and trying to find places for all of the medical equipment & supplies that threw up in our living room ;) ..But we are enjoying every minute of having our boy home with us. I just feel so complete now that he's here. Ahhhhh..it is sooooo amazing!!!!
Clay has been happy as a lark--he is just the best baby. I was afraid our house might be too quiet for him, since he has been used to the noisy NICU for the past 8 months...and I was kinda afraid he might be scared of all the new things out here in the big ol' world...but he has just been taking it all in, just as content as can be! Man oh man, we are so blessed.

I believe he enjoyed our first outing in the big city of Irvine today, to meet with our pediatrician this afternoon. Everyone there at the clinic was so accommodating & just amazing. We were let in the back door, so that we didn't come in contact with yucky waiting room germs...our room had a "Reserved for Clay" sign on it, and had been disinfected especially for him...how sweet?! Of course, Clay had to win over a few more ladies there ;) He's such a flirt!

Can I just say how incredibly humbled I feel?! I cannot say 'thank you' enough! You guys absolutely astound me with your love and support for our family and we are so honored to be a part of your lives. This overwhelming, embraced feeling is exactly the way I felt 8 months ago, while all of you were rallying together in prayer for us, while Clay was on ECMO & fighting for his life...now, we are rejoicing his homecoming and basking in the goodness of God's grace. It is so so sweet.

Now, I've got to catch a couple hours of sleep. I'm so tireeeddddddd...

Lots of peace & love & blessing to you all, from the bottom of my heart.

Monday, June 25, 2012

From NICU to CICU..

Just a short update before I catch a full nights rest...probably will be my last one for a long long time!

Lord willin', we will be HOME tomorrow! We've cleaned and sanitized and have worked hard the past couple days getting everything ready (with some awesome help..thanks, Mom & Dad & Chels & Eli!) :) We're so excited. A bit overwhelmed, maybe...but I'm so ready to be home and settled in with our baby boy. FINALLY!!

Like I've said before, we are about to start the second chapter of Clay's CDH story. Just because we are almost out of the ICU does not mean we are out of the woods--we are only bringing the ICU to our home. I've been calling it the CICU--Clay Intensive Care Unit :) He is on a ventilator, has numerous medicines, and is being fed through a feeding tube--they are keeping him alive.

It is so so so important we keep him healthy at home. Catching the common cold or a stomach virus would land us back in the hospital and could really turn ugly.

As much as we would like for each and every one of you to meet him, it is in Clay's best interest that we limit our visitors. He's still very fragile and his environment needs to be controlled as much as possible.  We need Clay to grow and thrive so he will be healthy enough to meet you all one day!

Please, don't be offended. We want to do what is best for Clay so we can keep him home--not in & out of the hospital. Lord knows we've seen enough of that place!

We SO appreciate everyone's support for our family. We love you all and are so very thankful for all your well wishes & prayers. Keep 'em coming, good friends!...See what they have done?!

WE'RE COMING HOME!!!!!!!!!!!!!!

Thank God.

Sunday, June 24, 2012

Our FIRST trip outside!

What a sweet sweet day.

Seeing Eric strap our baby boy into his car seat for the first time literally made me squeal. And I think Clay was excited about the new seat, too :)



Eric & I situated the suction machine, the pulse ox & the home vent in the stroller, which was a lot easier than I expected. Clay is off of his feeding pump for two hours during a 24 hour period, so we timed it so that we didn't have to worry about that piece of equipment for our field trip. We were trying to surprise our nurses and wheel him into their nursery, all strapped in and ready to go--but they busted us half-way ;)
Once we started out the door, I could hardly choke back the tears.. Lordy, I'm going to be such a mess come Tuesday (hopefully our discharge date!). It was just so awesome to stroll Clay through the halls of the hospital--past the cafeteria, past the elevators, past the pictures & artwork... past all the places I've walked by nearly every day for past 8 months. At times, that walk has been the scariest of my life, but on this day, it was one of my happiest. 


Clay turned his head from side to side, with those big bright eyes taking everything in...he's such an observant little bug. I think he was offended we hadn't done this before :)

We put little sunglasses on him before we got outside in the sun--can you imagine how bright that must've been for him?! I think he shut his eyes most of the time we were out there--and the 90 degree weather didn't allow us to linger long, but it was sweet while it lasted. We paused for some photos in front of the naked man sculpture--which makes for a pretty hilarious back drop..haha!


Such a ladies man!

Even though the sculpture does look quite hilarious in the background, that naked man is special to me. I can very vividly remember taking a walk one day with my mom and dad and sister...it was while Clay was on ECMO. We were so scared he wasn't going to make it. I remember looking at the sculpture and seeing that it was called 'Second Breath' and there's a quote on the base of it that says "The human spirit will always endure". Those words were truly a whisper of hope straight to my soul. I prayed then and there that God would give Clay a second breath--and that his spirit would endure through the fight of his life. Thank God for answered prayers, because today, Clay is still breathing and he's still enduring--and what spirit he has! My sweet boy sure is special..

..and handsome, too :)


Now, I can't wait to get him out the doors, in the car & HOME! :))))

Saturday, June 23, 2012

An update from our private suite ;)

In our private room, before our first sleepover last night :)

We survived our first night caring for Clay all by ourselves! I would say things went very well. We watched a little TV and played for a while, then we gave him a good bath & got him all fresh and clean, then he fell asleep about 10pm...and he's still asleep right now as I write this blog (it's after 10am!). I think the boy likes his sleep ;)

This momma, on the other hand, got maybe 3 hours of sleep through the night. When I wasn't giving meds, changing diapers, adding water to his humidifier & making sure his milk didn't run dry, I was up all night thinking about it...but I feel very accomplished and happy with how things went. I know one thing, it's gonna make it a lot easier when we get on a good schedule and have things organized and in their spots at home. I'm even more excited about it now!

I know lots of y'all were looking for an update, so I figured I'd let ya know we survived! :) Keep on sending those good vibes & prayers, my friends. You all are amazing & we thank you so much for standing by us..

Love & Peace to you all!!

Thursday, June 21, 2012

We're moving right along..

..Hopefully moving right out the doors come Monday or Tuesday :)

My head is spinning with all the things to learn and to remember and to do!
..Eric & I had our first 'class' today, to learn how to operate the suction machine, the pulse oximeter, and most importantly--the home ventilator! We still have another day of learning tomorrow, over the home vent again and the feeding pump. We will also be taught how to draw up meds, how to use the ambu bag, how to weight adjust the volume of milk he's getting, and I'm sure there's more I'm forgetting..
..Then tomorrow evening, we will do care-by-parent in a private room on the PICU side. Me and Eric will be totally responsible for doing all of his care, using all of our home equipment. I'm excited!! It will be our first sleepover!..Our first night ever taking care of Clay all by ourselves. I already have a list that is probably a page long of all the things to remember to do throughout the day and night. And I'll probably have to set 20 alarms throughout the day so I won't forget to give a med or do a breathing treatment or put milk in his pump. It's gonna be overwhelming, but I am so ready! :) It's a good thing I like to be organized and make lists and plan! Ha!





As I write this, I'm sitting here on a bench in front of the hospital, watching the sun set...how metaphoric?! I feel like the sun is setting on this phase of our life with Clay..  Lord willing, we will be out of the hospital in just a few days, and then we will begin a whole new chapter on this CDH story. A whole new, exciting, terrifying, wonderful, story!
Oh, I'm just a basket-case full of emotions right now..
I'm so excited, but kinda scared..and even sad. It's bittersweet to leave all the friends I've made here in the NICU. Leaving all the nurses who have been cheering us on since the beginning, who have watched Clay grow and develop...they have been our family while our family couldn't be here. They have advocated for us and fought for us and have taught us more than I ever thought I'd learn. I feel confident in myself to care for Clay because of all they've taught me.
I didn't expect this part of being in the hospital for 8 months--the attachments made with all of these special people. I hope they know how much they mean to me. I know a lot of them are reading this blog--so, all of Team Clay, please know how much you mean to me! You all are angels on Earth and the work you do is absolutely beyond incredible. I love you all and you will forever hold a special place in my heart...and you better come visit us ;)

And I'm also feeling especially thankful for our sweet friends, Noah and Brittany, who have given us a home away from home. I'm going to miss them! They've cooked us meals, introduced us to Big Bang Theory and Storage Wars and I think I know more about Reds baseball than I ever dreamed..ha! Their company has been a welcomed distraction away from the hospital, especially when things were at its worst. They helped us get through all the struggles in the NICU with our sanity. They've been so concerned & always ask for updates on Clay..and they have always made us feel welcome. My heart is so full of thanks for them..

Geeee golly, guys...we are so blessed.

This is gonna be the real test for us, as we start this new chapter...please continue to send your good thoughts & prayers to all of us. For a strong, healthy & happy Clay, and for Eric & I to be the most capable caregivers for him. I do not know how to thank you all enough!

Here's a few pics of our monkey :)





I think we are ready to go home :)

Tuesday, June 19, 2012

We're on a home vent!!

Clay's on a home ventilator!! He's been on the Trilogy 200 since about 9:30 this morning.

So far, he's been resting really well and seems real comfortable when he's asleep. But when he's awake, he can definitely tell something's different. He acts somewhat uncomfortable and his respiratory rate is a little higher than normal...but he's not throwing frantic, air hungry, sweaty fits. His oxygen saturation levels are good, the ventilator is sensing his breaths and he's getting good volumes...so things are looking relatively optimistic. We're just hoping Clay will level out and get used to the new ventilator with a little time.
Please be sending lots of good vibes and lots of prayers to Clay to transition well and be hoping for home vent success!

If things go well over the next couple of days, we will be doing training Thursday and Friday, then doing care-by-parent on Friday night, then we might get outta here early next week!! We gotta get through these next couple of days first..

Keep your fingers & toes crossed, my friends! Thank you all SO SO much for your continued love, prayers & support for my lil family. Lots of love and peace to you all! XOXO

Monday, June 11, 2012

Thoughts on this rainy day..

I woke up early this morning and fixed some homemade biscuits - made with fresh buttermilk from my uncle's milk cow. I fried some bacon and eggs and fixed some coffee. Eric had to take his breakfast to-go, so he wouldn't be late for work. But I enjoyed mine on the front porch, while I listened to the birds sing and the roosters crow across the creek. Early morning is such a great time of the day...

I've spent the afternoon cuddling with my favorite person in the whole wide world. Clayton is the sweetest boy. I love those quiet times, when he just rests with his head on my chest and looks around with those big bright eyes.. I played some music on my iPod and tapped his feet along with the beat. He grinned from ear to ear. We watched some Baby Einstein and we napped a bit, too..

Now I'm sitting in this beautiful lobby in the new part of the hospital, waiting during shift change. There's a guy next to me playing a pretty tune on his guitar.. And I can see the sun popping her head out to say hello. It's a great day.. And I just know we're going to be home soon <3

Sunday, June 10, 2012

Another good update :)

Just a super quick, really awesome update...

..Clay is now on CPAP for 2 hours, then on the ventilator for 2 hours, switching back and forth like that throughout he day. So 50% of the time, he's on CPAP!! And he's doing well. We're hoping that he'll be completely OFF the ventilator and just on CPAP by the time we go home!
..I can't help but feel a little apprehensive and nervous about it, just because of all the setbacks we've had in the past. But I'm hoping & praying this is really the time! Please, please hope & pray too! Pray for those lil lungs!
..Also, we've reached our full feed amount of 50mL/hour continuous feeds! He hasn't shown any signs that things aren't flowing the way they should.. Thank God! Now, he can finally come off the TPN and lipids he's been getting through his IV. Yayyyyy!

At this rate, Lord willin', we will get to come home to the hills soon. Your prayers are always appreciated, friends.

Lots of love to you all!

Wednesday, June 6, 2012

Good things!

Exciting things are happening, friends!

...Docs decided to try Clay on CPAP trials for 15 minutes, every 6 hours. The first trial was yesterday & they ended up leaving him on it for 30 minutes because he didn't even seem to notice the switch! I was at the hospital last night for the second trial and I couldn't tell anything was different...Clay was still grinning and playing and talking :)
...Back a few months ago, when we tried Clay on CPAP, it was pretty obvious he was not comfortable. But the last time, he was left on CPAP for good, instead of doing a trial for a few minutes...he lasted almost 48 hours before his left lung collapsed. So, I am glad that we're just doing trial runs, instead of switching all together. I'm hoping and praying we are moving forward & we won't have any set backs! Please pray, too!

..It's still obvious Clay is breathing much more comfortably than he was before his second repair surgery. He has been on 21% oxygen for nearly a month. And the fact that he has been intentionally talking around his trach is wonderful! When we are able to hear him 'talk', that means he has an air leak & he's not getting all of the pressures that the ventilator is giving him...but he hasn't noticed the air leak and has been talking up a storm, happy as can be ;) His voice is like music to my ears! And it's even cuter to watch him--he concentrates so hard as he maneuvers air around his trach to hit his vocal cords...I am so proud of him for learning to do this. He is such a smart little guy!

...We've also made our way up to 15mL/hour of continuous feeds through his G-J tube. We've had to go slow because not eating for nearly 2 months took a toll on the lining of his small intestines. Dr. Draus could see with the scope during last week's procedure that a lot of the villi in his intestines appears to have sloughed off.  The villi is responsible for absorbing nutrients, so it's important that they build back up--otherwise we'll face different problems. Of course, if the milk isn't getting absorbed, it will just run straight through him & come out the other end--they call it 'dumping'. So far, so good--no dumping! They say the closer we get to the 30mL/hour mark, the more we'll be able to tell if he's absorbing or dumping. There's no way of predicting how quickly the villi will build back up in his intestines, so please say lots of prayers for Clay and his intestinal villi. We need them to absorb all the nutrients so he can get some meat on his bones! Poor little guy is getting scrawny. He's still getting my breast milk, so hopefully it will be just what his body needs to grow big & strong!

The best thing of all: Clay just acts like he feels good. Before, when we were trying to wean on his ventilator settings, he would get grumpy & throw some mean fits--those frantic, air hungry fits, that I do not miss AT ALL. Now, Clay is just so happy at the time. He is just a little ray of sunshine, brightening everyone's day. I am so in love with my little stinker.
..And so is everyone else in the NICU! I don't know what everyone will do when we go home. I will certainly miss all the friends I've made, too.  I am so so thankful for all of them and their love & support they've shown our family.

But I will be so glad when the day comes that we can all be together with Clay in our home. I know how hard this is on my mom & dad & sister, and all of Eric's family, too. I update everyone as much as I can, but I know they wish they could be here in Lexington, spoiling the little feller too. One day, family! One day!

For now, keep the prayers & good vibes coming! Lots of love to you all!

And Clay loves you, too! :)



Tuesday, May 29, 2012

Gastrostomy-Jejunostomy Tube...check!

We made it back from the O.R., with a Gastrostomy-Jejunostomy (G-J) Tube today...A new extension to our newest accessory. Exciting, huh?! Well, I'm pretty excited myself..hopefully it will do the trick and Clay can start 'eating' again.

..The G-J tube is a feeding tube that bypasses his stomach and goes straight into his jejunum--which is the beginning of his small intestines.
..Dr. Draus put a scope down to see what was causing his stomach not to empty. He said it looks like, because of the positioning of all his innards, his stomach just has an unnatural bend in it...his anatomy just doesn't quite flow the way it should because it's been rearranged so much.
..Besides putting the feeding tube into his jejunum, Dr. Draus didn't do anything else to fix his anatomy placement. He's hoping with time, as he grows, it will all work itself out. If not, it may require a future surgery down the road. But as of now, we will be happy for Clay to get nutrition through his G-J tube.
..Hopefully, he will tolerate feeds into the G-J tube & we can get him OFF the daggone IV fluids and meds! ..Please send up some major prayers for our Clay-bug. We need him to handle his feeds and handle them excellently! They started a trickle of milk tonight, at 1 mL/hr. Once his body gets used to digesting again, they'll give him more milk. C'mon, Clay tummy! Workkkkk!
..If we can get up to full feeds and off the IV fluids, we can try home ventilators again! My fingers and toes are crossed that we catch a break and things go relatively smooth..

We wanna go HOME!! And away from this crazy town. My car was broken into again last night and the assholes got my camera this time. I hope they take beautiful pictures with it--or that they look at the pictures of our beautiful miracle and it puts hope in their hearts. And I hope the spare change from our console and my running shoes they took are just what they needed, too. Grrrrrr! Nothing burns my biscuits like a thief. But I suppose they're fighting a battle of their own..
Anyways, the point is: we need to go home :) Pray for us all, good friends.

Lots of love and peace to you!
..and a pretty sunset pic, taken from our front porch over the weekend :)

Wednesday, May 23, 2012

7 months..

Hello again, friends! :)

Clay is still doing very well! The boy's got spunk, let me tell ya! We have the best time with him..he is such a sweet blessing. And so entertaining! All the NICU staff agrees too, I believe ;)

...We are on the O.R. schedule for next Tuesday, the 29th. Dr. Draus will be trying to fix the problem that is causing Clay's stomach not to empty. Please be praying for a quick, easy fix. And for a smooth operation & recovery. And pray, for everyone's sake, that this is the last trip to the O.R. for a looong loooong time.
...Clay is still ventilating well! He's been on 21% oxygen--ROOM AIR--for nearly 2 weeks now! Incredible! His pressures continue to get weaned slowly..and he's not seemed to notice. Such a big improvement from before. Continue to pray that his little lungs & diaphragm heal and grow just as they should. And please be praying that we can get transitioned to a home ventilator with no hiccups or set-backs, whenever that time comes..

I couldn't help but tear up tonight, as I cuddled Clay up tight. Our little fighter is 7 months old!!!! From the highest of highs, to the lowest of lows, we've been through it all. Yet again, I am feeling so overwhelmingly thankful for God's grace. Thankful to hold my sweet boy tight and smell his sweet baby skin and watch him sleep. I pray that Clay will continue to be strong, happy & healthy..and that we can get HOME soon. Seven months is a long time. And while the NICU is our 'normal' now, I cannot wait for the day me & Eric get to sit on the porch with our little buddy..

..One day...

But for now, we will continue on, with lots of love & thankfulness & patience in our hearts..

Love & blessings to you all! XOXO

Monday, May 14, 2012

Our bumpy road continues..

Here's what has happened since I last updated:

...Clay is totally OFF morphine! Yayyyyy!!! ! No withdraws, either...thank God!
...Reflux has still been an issue...so he still hasn't been fed :(
...We had a g-tube study done on Friday to see what may be causing the reflux problem. The study was done by putting a contrast dye through his g-tube and then shooting x-rays to see how it flows through his digestive system...or not flowing, in Clay's case. For whatever reason, Clay's stomach is not emptying. So the reflux problem has been caused by his lil tummy getting too full, thus making him puke. 
...Now his g-tube is set to drain, so it's pulling all the secretions/saliva/etc. off his stomach...thankfully, this has gotten his reflux under control. So no more pukies (for now)!
...Dr. Draus wants to wait a couple of weeks before we investigate the problem any further. He wants the g-tube site to heal really well before they have to go poking around it again. They will probably start out with an endoscope, to see what they can see..then go from there. This may end up being yet another surgery for Clay. Boooooooooo. I swear, we are going to hit every possible bump in this CDH road. But we WILL get through it! Please pray that it is an easy fix.
...The g-tube has created some problems, but I think it has helped Clay's breathing--now that his stomach is off his diaphragm. He's been on ROOM AIR (21% oxygen) since Thursday!!! This is really good stuff!  The ventilator is still giving him extra pressure with every breath, but the settings are relatively low--especially considering all his little lungs have been through!
...Also, Clay now has an uncuffed trach, instead of a cuffed trach..and he's doing really well with it! He's still getting good pressures from the ventilator, despite the air leak he has with the uncuffed trach. And we are lovin' that air leak, because we are getting to hear his voice. I'm not gonna lie, it really freaked me out at first, to hear him whimper and cry and makes noises around his trach...it's just so weird to actually hear him! He's also let out a few giggles and squeals..and boy, does that sound so sweet! :)

Even though we're facing another hurdle, my baby is happy and we are thankful. He is such a blessing to everyone who sees his sweet smiley face and I am so so so grateful to be his mommy.  I couldn't have asked for a better first Mother's Day, getting to hold my baby in my arms.

He is just amazing. And God is so so good.

Thank you all for standing by us...your love & prayers & support mean so much to us. We can feel them..they are carrying us through!

Keep praying & believing, my friends. Much love to you all!

Monday, May 7, 2012

Working out the kinks..

Sorry for my lack of updates, friends! There's not been a whole lot new to report. Clay is still doing really really really well! Happy as can be and playing with everyone :)

We've had some issues with him refluxing, so he still hasn't been fed since his gtube surgery last week.
...This past Friday, docs started Clay on a medicine called Reglan, to help him move things through his stomach faster. Reglan can have some pretty nasty side effects, but thankfully none have showed up yet. Please pray that the med will continue to work and cause no adverse activity!
..His gtube has been set to drain all weekend, so it is pulling all the extra saliva/secretions/stomach juices off of his stomach, so he won't throw it up.
..Today, they 'racked' his gtube, so it's vented and air can escape, but all the secretions are able to stay in his tummy. If he can handle things in his stomach and not throw up, we'll be able to try feeding through his gtube tomorrow! Please send lots of good vibes and prayers to Clay and his tummy--that he will tolerate feedings and we can get him off the IV fluids.

Doctors are giving the go-ahead for home vent trials, too!! Please, please pray we find one that is successful!!
He had a couple of excellent blood gas labs today, so they weaned on some of his ventilator settings. So this is awesome! Yay, Clay!!!

It still amazes me how far we've come in three weeks. Clayton Cash is a fighter! Thank God!

Much love and peace to you all! <3

Wednesday, May 2, 2012

We have a new accessory!

Another surgery behind us, and hopefully it's the last one for a looooooong loooooooong time.

Surgery day hasn't got any easier for this momma, even though this is the 6th surgery in Clay's 6 months of life. It still gets my blood pumpin' when I see all the nurses and anesthesiologists come in in their blue scrubs, ready to whisk him away to the OR. I always walk out with tears in my eyes, holding on to Eric's hand..and praying like crazy!

They took him down around 1:30 yesterday afternoon..and they started out with the Broviak.
...After that, they tried doing the g-tube with a scope going down his throat and into his stomach. The scope has a bright light on the end of it...the light shines through the stomach and can be seen through the abdominal wall, so the surgeons will know where to place the feeding tube. This would've been the easier, less invasive way to insert the g-tube..
...but Clay's stomach was still in odd placement from the repair surgery two weeks ago, and the docs couldn't see the light shining through his abdomen. So they had to opt for the more invasive laparoscopic procedure instead..
..With this procedure, they put a camera through Clay's belly button and used it to find his stomach, which was sandwiched between bowel and diaphragm. Dr. Draus said he had to peel the stomach away from the underside of his diaphragm, because scar tissue had grown around it. He said that once the stomach was off Clay's diaphragm, he was easier to ventilate. So this is really good! With his stomach not putting pressure on his diaphragm, hopefully his left lung will have lots of room to expand and he can just breathe better all together. Pray this is the case!
..Once they got the stomach in good placement, they inserted the g-tube. They were able to put in the mic-key button. I'm still not totally sure about all the g-tube lingo, but I know the button is better and easier to deal with..so this is good! I've still got a lot of learning to do with the g-tube..
..He came up from the OR around 4 yesterday evening and he rested really well all evening.

Our nurse overnight said he slept all night long and never required any extra pain meds or sedation..then, when our day shift nurse came in at 7 this morning, he woke up and was smiling! He has played and smiled all day, with a few catnaps in between.

I swear, this little guy just amazes me! You can't even tell he had surgery yesterday. I know I shouldn't be surprised, though..with all the praying we've done! He sure is a tough cookie.

So the plan now is to give his stomach a couple days to rest, then we'll try to start feeding him through his g-tube. And we'll continue to wean the morphine, which should be off in a few days if he tolerates it well!

Keep on praying that Mr. Clayton Cash continues to make excellent progress and keeps moving forward..'cause at the rate we're going, it won't be long until home ventilators are back in the picture!

I am just in awe and so so thankful for our sweet, strong baby boy. We are so incredibly blessed in every aspect of our life. God is so good!

Thank you all, again, for the millionth time. We love each and every one of you..and I pray for peace and blessings to all!

Here's a pic of our sweet boy with NO TUBES on his pretty little face! And also a pic of his latest accessory--the g-tube:

Monday, April 30, 2012

Another surgery tomorrow..

Clay has been doing so incredibly well! He just smiles and smiles and smiles all day long. He acts like he feels so good..and I can imagine with all he's been through lately, he does!

His morphine is weaned all the way down to 95 (it was at 410, less than 2 weeks ago)! And we can't even tell he's being weaned! Last go-round with the morphine, he would get the shakes and throw the awfulest fits. But he has handled this like a champ! So so thankful for more answered prayers.

And he's tolerating feeds again..we've slowly worked our way back up to 20mL/hour of continuous feeds. He's still not at the full feed amount, so he's still getting TPN fluids and lipids through his subclavian central IV line...

...well, the subclavian central line is not very permanent and our surgeons are afraid that the line will go out soon, because it's been in for two weeks already. And we really need that IV line because he's getting all his many meds, fluids, lipids through it.

So this morning during rounds, our surgeons decided it's a good time to put in a Broviak (a more permanent IV) and to go ahead and put in the G-tube (a feeding tube that inserts directly into the stomach).. TOMORROW!

So here we go with another surgery...not nearly as invasive or risky as the repair surgery done two weeks ago, but it's another surgery all the same. They all have risks..with infections, bleeding, anesthetics, etc. So please say a prayer for another successful day tomorrow.

I knew we would be facing another surgery day, but I'm kind of bummed it's happening now that Clay is back to his happy smiling self. But I know it really is a good time to do it...

This way, we can wean him off all the drugs and start feeding him through his G-tube, then we can get him on a home vent and go HOME!!! I'm optimistic that day is not too far down the road :)

Clay looks pleased with that plan, see:

Tuesday, April 24, 2012

6 months!

My big guy had a big 6 month birthday!!

His nitric oxide is turned OFF!! His chest tube is gone!!! And he's back in his big boy crib!!

We're having issues with him keeping food down, though. He's been gagging and throwing up all day. The docs turned off his feeds for the night and plan to just give his tummy a rest. They think it's just gonna take some time to wake up his digestive system after not eating for a month. Please say a prayer that all the kinks get worked out and he can tolerate his feedings again.

Aside from that issue, everything else is going really well! Dr. Draus, our surgeon, came by tonight and said he's very very pleased with his progress. He said he's relieved the feeding issue is all we're dealing with one week post-op. What a difference a week makes!

We're making progress weaning the morphine..but we still have a ways to go. Send Mr. Clay your positive thoughts and vibes while he's coming off the drugs. He's not been resting very well the past couple of days...I guess the lil guy just don't want to miss a thing after being out for an entire month!

I'm feeling so thankful for my sweet baby's 6 month birthday. Love that little turkey so stinkin' much..

Sunday, April 22, 2012

Recovery update..

After a couple of rough days post-op, things are really starting to get better for us! Thank God!

Our major issue the first few days were getting his pain under control..he'd kick right through all the drugs, obviously uncomfortable. It turns out, he was having an allergic reaction to the blood transfusions he was getting. Poor baby! I feel sick thinking about how uncomfortable he was, probably itching from the inside out. It's very very rare for babies to have this type of reaction to blood. Of course, Clay has to keep everyone on their toes! If Clay ever needs blood again, we'll have to make sure he gets Benadryl before the transfusion. It seems to be nothing too concerning, but it definitely explains why he has been so hard to knock down with the sedation and pain meds. I'm sure he was absolutely miserable! Thankfully, that's behind us.

Since Friday, we've made great progress!
...His nitric oxide is currently down to 3..his milrinone dosage has been cut in half. Both of those should be gone in the next few days if he keeps it up!
...His catheter was taken out..and so was his replogle (the big huge tube going down his nose).
...He has a feeding tube and we've worked our way up to 20mL of continuous feeds, and that's increasing daily..hopefully he'll be at full feeds soon and we can get rid of the TPN fluids and lipids!
...We should be able to get his chest tube out in the next couple days (which is draining gunk out of his chest from surgery).
...And his morphine dosage is slowly coming down, too. He's not requiring nearly as many extra doses of sedatives either! It will take a long time to get him off of the morphine...and Clay will not be happy going through withdraws. Please pray he can be weaned easily.
...He had a 'sedation holiday' today, where his morphine was turned off for a couple of hours and he did well with that! I think it helped that momma was holding him through that time, too ;)
...YES! I got to hold my baby today!!! We got some really good time together.. I'm sure it felt so good for Clay to get out of that ol' bed for a while..the poor little guy is so stiff. Once he's more mobile (and it doesn't take 3 people to get him and all of his accessories out of bed), he'll never be in his crib!

I am just feeling SO relieved that things are progressing so well. All of the doctors & surgeons are really surprised that he's bouncing back so quickly. They were expecting a much much sicker baby after surgery. Clinically, it may be surprising...but I know it's because our prayers are being heard and Clay's fighting spirit ain't backin' down! All of your unwavering prayers and support is getting us through..and words cannot explain our thankfulness to each and every one of you.

I am so stinkin' proud of my sweet baby boy. He is just amazing! Y'all keep praying for his total healing.

Lots of love and peace to you all!