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!


  1. I am so excited to hear how well things are going for you guys with Clay at home! Awesome teeth :)

  2. You all make me a better person- I'm going to get off this couch now and work my butt off!

  3. I think you and Eric are just the most awesome parents wonderful for that little guy to belong to you and your family.Keep up the good work and know you are loved and respected by myself and mony others.

  4. I am so proud of you two.You all could have been like a lot of people, when things got so tough you could have just threw up your hands and. bailed out, but you didn't. You all are awesome parents and baby Clay is so blessed to have you all. I just want to tell you it gets sweeter everyday to be a parent. I live, breathe and sleep for Jon.He is my life and no matter what we go through, it is well worth it. If we can ever do anything for you all, all you got to do is just let us now. Love and best wishes. The Rawlins

  5. Hannah, I am a big supporter of breast feeding. Message me on Facebook, I think I can help get you to one year!
    Misty Epperson