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! 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 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)'s SO crazy how things work out. Her help will be so so 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!

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 content and curious. Here's a few pics of us enjoying home life:
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 :)