My head is spinning with all the things to learn and to remember and to do!
..Eric & I had our first 'class' today, to learn how to operate the suction machine, the pulse oximeter, and most importantly--the home ventilator! We still have another day of learning tomorrow, over the home vent again and the feeding pump. We will also be taught how to draw up meds, how to use the ambu bag, how to weight adjust the volume of milk he's getting, and I'm sure there's more I'm forgetting..
..Then tomorrow evening, we will do care-by-parent in a private room on the PICU side. Me and Eric will be totally responsible for doing all of his care, using all of our home equipment. I'm excited!! It will be our first sleepover!..Our first night ever taking care of Clay all by ourselves. I already have a list that is probably a page long of all the things to remember to do throughout the day and night. And I'll probably have to set 20 alarms throughout the day so I won't forget to give a med or do a breathing treatment or put milk in his pump. It's gonna be overwhelming, but I am so ready! :) It's a good thing I like to be organized and make lists and plan! Ha!
As I write this, I'm sitting here on a bench in front of the hospital, watching the sun set...how metaphoric?! I feel like the sun is setting on this phase of our life with Clay.. Lord willing, we will be out of the hospital in just a few days, and then we will begin a whole new chapter on this CDH story. A whole new, exciting, terrifying, wonderful, story!
Oh, I'm just a basket-case full of emotions right now..
I'm so excited, but kinda scared..and even sad. It's bittersweet to leave all the friends I've made here in the NICU. Leaving all the nurses who have been cheering us on since the beginning, who have watched Clay grow and develop...they have been our family while our family couldn't be here. They have advocated for us and fought for us and have taught us more than I ever thought I'd learn. I feel confident in myself to care for Clay because of all they've taught me.
I didn't expect this part of being in the hospital for 8 months--the attachments made with all of these special people. I hope they know how much they mean to me. I know a lot of them are reading this blog--so, all of Team Clay, please know how much you mean to me! You all are angels on Earth and the work you do is absolutely beyond incredible. I love you all and you will forever hold a special place in my heart...and you better come visit us ;)
And I'm also feeling especially thankful for our sweet friends, Noah and Brittany, who have given us a home away from home. I'm going to miss them! They've cooked us meals, introduced us to Big Bang Theory and Storage Wars and I think I know more about Reds baseball than I ever dreamed..ha! Their company has been a welcomed distraction away from the hospital, especially when things were at its worst. They helped us get through all the struggles in the NICU with our sanity. They've been so concerned & always ask for updates on Clay..and they have always made us feel welcome. My heart is so full of thanks for them..
Geeee golly, guys...we are so blessed.
This is gonna be the real test for us, as we start this new chapter...please continue to send your good thoughts & prayers to all of us. For a strong, healthy & happy Clay, and for Eric & I to be the most capable caregivers for him. I do not know how to thank you all enough!
Here's a few pics of our monkey :)
I think we are ready to go home :)