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. 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 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, 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 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 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 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! :)