Wednesday, February 22, 2012

4 months.

Clayton Cash will be 4 months old on Friday! I cannot believe how fast my little booger is growing. He's now 12lbs 6oz & getting stronger by the day. But unfortunately, still not strong enough for the home vent just yet. We had two trial runs this week, with two different ventilators & Clay didn't like either of them. The boy is ornery, I tell ya! Stubborn like his daddy ;)

The plan now is just to fattin' him up. The bigger he is, the bigger his lungs are & the more force they can exert, at least that's what we're hoping. His diaphragm & other breathing muscles need to get stronger too. After he puts on another few pounds, hopefully we can get him out the door.

But, it looks like it will be Spring before we get him home--which I am happy with! Cold & flu season will be nearly over. And Spring is a perfect season for new beginnings. We can sit out on the porch & listen to the birds and the frogs and the bugs. We can look at the blue sky and the green grass, and see the flowers bloom. We can watch the sunset & breathe that good fresh air!

Clay will love it! He's so curious & observant..definitely a nosy neighbor in the nursery :)  He watches all the nurses walk by, caring for the other babies. He'll peer at the babies beside him, all swaddled in their beds--they're at least 1/2 the size of him. He'll check out their oxygen levels & heart rates on the bright blue screened monitors above their beds. He's still so fascinated with his mobile, too. He will occasionally pay his momma some attention--but I usually have to block his view of everything else..haha! Nah, we've really gotten some great bonding time lately. My little lovebug sure is a good snuggler.

I can tell he's getting stronger physically, too. He's doing a lot better with his head control...& with that big ol' noggin of his, that's a big deal! ;)  He's also been reaching out to grab things, usually my nose & mouth. Then I'll eat his little fingers, which he thinks is real funny.  I wish so bad we could actually hear him laugh & coo & cry--but the trach keeps the air from hitting his vocal cords, so he can't vocalize at all. But whenever that trach is gone, I have a feeling he'll constantly make noise. And I'll love ever minute of it :)

Please continue to send us your prayers & good vibes, we need all we can get to get this little guy home! Again, thank you for standing by us.

Lots of love & peace to you all!!

Friday, February 10, 2012

15 weeks.

We had yet another home vent trial on Tuesday, and again, Clay was not happy about the changes.  A Trilogy 200 was brought in, which is a very nice ventilator! He was put on this ventilator around 4 o'clock Tuesday evening..and by Wednesday morning, he was struggling. When I came in, his nurse Stephanie was trying to calm him out of a fit, but he was inconsolable. After I took over, he was still a frantic mess. I tried everything to calm him down, but it was like he was having a panic attack from being so air hungry. He threw a fit for a solid hour before the doctor finally came and switched him back to the hospital vent.  During it all, I broke down too. I felt like we were torturing him by leaving him on the home vent! Obviously, something was not right and he was so uncomfortable, it absolutely broke my heart! After the switch back to the old faithful, Clay instantly calmed down. His color came back, he stopped working so hard to breathe, and within minutes he was giving out grins again. And momma was happy, too ;)

We will stay in the hospital as long as we need long as Clay is happy, I am happy.  I believe the Trilogy 200 ventilator will do what Clay needs, it's just a matter of finding the right combination of settings to get to his happy spot. And some time to grow won't hurt him either.

In the meantime, hopefully we'll make some progress with Clay eating orally. We have been trying breastfeeding and I am so excited!! Clay has definitely made progress with his oral aversions, but he is still very hesitant to latch on & suck. I do feel like he is more receptive to the real thing, than to the plastic pacifier or bottle. But it's pitiful to watch his internal struggle...I can tell he wants to, it's his instinct...but then he doesn't want to, because of all the negative things he's had in his mouth in his short life. But I think he'll get it eventually, and it makes me excited to think of life with no more pumping! Ha!

Another good thing this week: we had a follow-up ECHO done on Monday to make sure his Pulmonary Hypertension did indeed resolve...and it has! He has been off of Sildenafil (Viagra..ha!) for over a month, and the Pulmonary Hypertension is still gone, thank God! I think I failed to mention this huge event in previous blogs, but it is HUGE! Pulmonary Hypertension is one of the biggest risks to babies with diaphragmatic hernias--it's why so many babies don't make it. We were told he would be on Sildenafil for years to combat the PH, but it resolved in 3 months! Another miracle, I believe.

Just think of the stories we can tell Clay when he gets older...a recovering morphine addict, steroid using, Viagra taking, ladies man, all by 3 months of age. Or maybe we won't, we don't want him to relapse ;)

Believe me, I have never been more ready to get home to the hills than I am now...just to get away from this crazy city! Last weekend, my car was broke into & my ipod was stolen...bummer. (I'm just thankful my camera & computer were with me, or that would have been a huge huge bummer!) Then, a few nights ago, my car got towed in the middle of the night!! Seriously?! I could list a few more unfortunate happenings over the past couple months, but I don't want y'all to feel too sorry for!

Despite it all, we are alive & we are (getting) well...and we have lots of love in our hearts. And we thank you all so much for standing by us!

Here's a few pictures of the little stinker :)

Gettin' some daddy lovins :)

My big boy in his bouncer.

Snugglin' with mommy (in our comfy chair!!)
Little monkey!
So thankful for that sweet smiley face. 
 Life is Good.

Wednesday, February 1, 2012

14 weeks & we keep on truckin'..

So, after things didn't work out with the home vent last week, the docs wanted to try Clay on a round of steroids (to boost lung function), then get aggressive & try to wean him off the vent altogether. Welllll, t'was a good thought. We could see an improvement with the steroids; he was down to 21% oxygen after the first dose. But once the ventilator settings started to get messed with, Clay wasn't happy.

Monday, vent settings were cut in half & he did okay with the changes. Then on Tuesday, Clay was put on CPAP.  We could see that Clay was working harder at times--his respiratory rate was high, he was retracting & just not acting comfortable. But we hoped he would level out and get used to the different way of breathing. He was fussy, but I was blaming the steroids for his irritability--a little 'roid rage, ya know?! But then, Clay had a rough night. He even dropped his heart rate & oxygen levels so much at one point, he had to be ambu-ed (resuscitated). So, an x-ray was ordered & it showed his little left lung had collapsed again. Dang it.

We knew it was a long shot, but I was hoping so bad to get off the vent! I could just see us going home, dancing all around the house, no tubes attached (no ventilator, at least), feeling so free! And I've felt guilty all day for Clay's uncomfortable-ness. We knew he wasn't his normal self yesterday, but we hoped he would settle out...wanted so bad for him to pull through and fly. But he definitely let us know he wasn't ready. And we can at least say we gave it a valiant effort.

Clay got his vent settings back this morning & is rebounding well. Still on the mend, but he's getting back to his bright-eyed self. I'm so proud of my boy--he tried so hard, poor feller!

The plan now is to let him rest & recover the rest of the week and over the weekend. Then, we're going to try a different home vent on Monday. We're getting the same kind of vent that Clay's buddy, Mason, is on (and doing well on! yay!!!). Please pray he has great success. And that Mason will keep it up and finally get to go HOME! :)

Ya know, I feel like I've held it together real well the past couple months, but I felt pretty down this morning. It's just not fair! All my life, it seems that all I've wanted to be is a momma--and here I am, scared sometimes that my baby doesn't know me as his momma. It's not fair that we've had to spend the past 3+ months away from home. But as soon as I start to feel sorry for myself, I think, 'it could always be worse'--and it could be SO SO SO much worse.

Then I think about all our blessings. All the kind words & prayers & thoughts that have embraced our family. All of the donations & financial help that has helped relieve stress. The new friendships & relationships made with other families & nurses. Our awesome friends, Noah & Brittany, who have let us practically move in with them for the past few months. The thankfulness I have for Eric. I don't want to gush, but he is beyond incredible. I cannot imagine going through this with anyone else. The support from my amazing and wonderful family--I don't know what I would do without each & every one of them.

Another thing that cheered me up today: we moved to a window seat in the nursery today & I love it. And I got a comfy chair to sit in! Seriously, when I get rich one day, I am going to donate some comfy chairs for the NICU. They do have a few gliders for parents to sit in, but they're pretty awful on the tush & most of them don't even rock. So I'm stoked I snagged a comfy chair--I think I can probably sneek a nap with my lil guy tomorrow.

See, things aren't that bad ;)