Now, the plan is to wait & see...
...If he's doing well come Tuesday, the surgeons and neonatologists feel like doing the surgery to insert the g-tube (a feeding tube that insets directly into his stomach) would still be a good idea. That way his stomach will be 'tacked down' into place, and out of his chest cavity.
...They also hope to put a post-pyloric feeding tube in, which will feed directly into his small intestines and bypass the stomach. This will decrease his risk of aspiration--which is probably what caused this pneumonia in the first place.
...If all of this happens, they can start feeding him again, rather than giving his TPN and lipids through his IV...which is bad for his liver if done over a long period of time. We sure don't need any liver issues on top of everything else we got going on! So I'm really hoping to at least get the g-tube surgery out of the way on Tuesday.
...The docs also stopped his paralytic yesterday, to see if he can tolerate being awake a little more.. so far he's done okay. He's required a lot more morphine and extra sedation doses, so now it's just finding his 'happy spot' with all of these pain/sedation meds . His poor little body twitches and jerks and his little eyes look crazy wild, but it is so good to see some sign of life coming from him! After three weeks of being down, I can't imagine what he's feeling.
I feel like I've been allowing myself too many pity parties again and I don't like it.
Yes, this sucks. No, it's not fair.. But there are a lot of sucky, unfair things in the world..
We are not guaranteed anything in this life!
This CDH battle has only begun..it's something that will never just 'go away', no matter how bad I wish it. We gotta suck it up & get used to it and be brave like my Clay! It's all in God's hands and my God is good.
There is a purpose and a plan for all of us and I know God is doing big things with my Clayton Cash. There are so many people who have been touched by my little mans life..and he's only just begun!
Please, don't feel sorry for us. Pray for us and celebrate with us! This is the life we were dealt and we will not be victimized by it. We will be creators, not victims (shout out to all my HCOP peeps ;))!! We will fight and we will get through this stronger, braver, more faithful people in the end.
We all have our trials and tribulations but with the right mindset, it makes things a helluva lot easier.
Okay, I'm off that soapbox.. now onto another one.. :)
This Thursday, April 19th, is the International Congenital Diaphragmatic Awareness Day (and ironically, also my birthday). It is a day for all of us affected by this devastating birth defect to push for awareness and advocate for more research to be done. More research must be done...to find the cause of CDH...to find better medical interventions, so our babies have a better chance at a normal & healthy start to life..
Here's how Clay's anatomy probably looked when he was born (and maybe looks now, since he reherniated):
For now, here's what you can do:
...Please, sign this petition & share it with your friends.
...Check out this CHERUBS research website & learn more about CDH. Donate money to help, if you want.
..."Like" the CHERUBS page on Facebook to keep up-to-date on the ways you can help.
...PRAY!!!!!! For Clay & all of the other cherubs born with CDH.
Thank you all, so so so much!
Keep praying & believing! Much love!