Today started with throwing up....again. Yesterday it was every 3-5 minutes. You slept peacefully last night and had a lot of pain meds. Today, we started drinking a few sips and you got sick. You took a long nap after sipping and when you awoke, you didn't throw up anymore!!! Maybe we are finished with being nauseated. We lifted your heavily - drugged self into a padded rocking chair today and propped you straight up. You slept through it all, but it was great for your lungs. 
Pain.. Lots and lots of pain today. Your neck port was taken out today!!! That was a painful experience in itself, but you handled it! We got you off lots of tubes except the chest tubes (painful!!!!) and an oxygen cannula! You also have several sticky monitors, but we got rid of your pacers (never needed!) and many others. You have an IV taped to your hand in case you need something, but nothing is connected to it! You are taking all meds by mouth and doing great! You are such a star! Today we had a lot of visitors to break up our day up. It made it go by faster and more enjoyable! Your Aunt Peggy came by, Nana JO,Aunt Polly,and Pop Daniel. Later we had our friends from church, Jessica, Tammy and Krisinda come by. I went to eat with them downstairs and that was so nice!!!! We had lots and lots of good laughs!
This morning I told Justin to rest and I was sipping coffee and handling you. I had been drinking the coffee and it was great. It started to taste minty and I wondered what happened, but I'm so tired I just kept drinking it. So I get toward the end of the cup and see a large lump in the bottom. I am surprised my creamer lumped up like that! So, I finished it off to see that your daddy had decided to spit his chewed gum in a "garbage" cup. Oh my word. Not good.. Not good at all!!!!!! Hahaha
We got you a tiny hospital gown shirt this afternoon to wear since you are almost tube free! Woo Hoo! You also have the ok to eat soft foods so I got you some applesauce, some jello, sweet potato and pineapple. You didn't eat a bite! You're just not ready. The nurses said once the chest tubes come out, that you will drastically feel better and have an appetite. I am hoping that we get moved to the floor tomorrow, but we will see!!!!
Oh, my sweet girl, how you make my world spin.
I've been keeping up with Nana Mary about the kids. She is keeping them and doing their school work to keep caught up. Thank goodness!!! Your brothers and sisters miss you deeply. I miss them, too! They are coming once you get to the floor and maybe you can go play with them in a playroom!!!!!
We will hopefully be able to go to the beach Oct 24th as a family! We are praying that this works out. We were going SEPT 19, but luckily, we got to change the reservation. We hope to have a carefree week soon.
Your hospital ROCKS. If you're sick, it's the greatest place to be! The nurses are top - notch! They are so caring and patient. We love it here! In the PCICU, we have a couch that one parent can sleep on and then the other parent goes to a sleep room. It is a mini hotel room and such a blessing!!!! They also have washing machines and dryers that we can use which will be very handy in a few days! There is also a Ronald McDonald charities room with snacks, canned food items such as soup, oatmeal, etc. That has been so nice to get to save a little money here and there. Yesterday and today, two local businesses gave us lunch in that room. What a blessing it is for people to care. We are so thankful that your heart will be as good as new and hopefully nothing will ever be needed. Your condition has a 90% mortality rate by age four. That is crazy!!! You are such a miracle. Please don't waste your miracle as you get older. Please use this as part of your testimony that I pray you will have one day! You are doing big things now, but one day I hope you do even bigger things. Your story has touched the hearts of many, little one!
Sleep tight,
️Mommy ❤️
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