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.

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