Day Eleven Post Op

We need bigger clothes, Charlie! I think we will need to use
some of the donations toward clothes that actually fit. 

My little Charlie Buckets has kept me busy this morning after a crappy night's sleep. The night nurse didn't get him to feed well, but Momma has the magic touch. At 8am, I got him to eat 4ozs. We decided to wait until 12pm to feed him again, and then the little porker at 6ozs! He didn't throw any of it up either!! His nurse today simplified the room by getting rid of the machines he isn't on anymore, especially since they switched most of his meds to suspension meds vs. IV meds. (They put it in his feeding tube instead of by mouth so he isn't deterred from eating his bottle.) Today is the first day in almost two weeks he is wearing clothes again! Despite the fact they're a little too short on him. lol He is having a fabulous day. He was very awake yesterday and is today. It's awesome. He babbles. He cries. He is doing very well today. I am very happy as far as Charlie's recovery. He is only on a small does of the IV milrinone, IV lasix, and IV amiodarone. They are giving him electrolyte supplements to replenish what he is losing from the lasix, methadone and ativan (both were weaned down some more.) He only has his feeding tube, pacing wires, IV, and "A" line in. (Also, the monitor leeds and the O2 toe thingy, and the blood pressure cuff, but those are all minor things he will have when he is transferred out of the ICU.) Dr. Baird told me this morning that by Monday we should be out of the ICU, and most likely by Friday or Saturday, we should be home. The nurse told me another week in the ICU and another week "on the floor", as they call it.  They are also going to try to switch him from the milrinone to the captopril that he will be on at home. (Another IV machine down!) and they will transfer him lasix to oral after everything else is switched. Later on today, the "arrhythmia team", as the nurse called them, will be down to decide what to do about the amiodarone and Charlie's arrhythmia. (Maybe another machine down?) I'm just so happy my little boy is making progress.

Insert a cute picture of Charlie since I am talking about my personal stuff.

I am not happy about the talk Timithy and I had last night about the whole "Let's get married before our anniversary" idea. He doesn't want to because he doesn't want another date to remember. Honestly, I am not sure that is the reason. What can I do though?
I'm not sure if I mentioned it yesterday, but I will briefly reiterate. (I can't remember if it was a conversation I had with someone or if I wrote it in the blog. It's been a long two weeks.) I write about my feelings and my personal life AS WELL AS Charlie's journey because I want any other heart mom (mom with a child with a heart defect) to know that what she is feeling is completely normal. I want my blog to be a way for anyone in my shoes to feel like they aren't alone. It is a very lonely situation. You feel like you are living in this completely different world than everyone else, and it's like they are trying to reach out to you, and you are trying to reach out for them, but it's not the same. It's very difficult to explain to anyone who hasn't been through this. (I know I keep saying that, but it truly is insanely hard to describe unless you've walked this road.) I talked with Tim's grandfather yesterday, and we could sympathize with each other. Obviously, our situations were different, but it was nice to feel like there was some correlation between us. Being in this sort of situation changes your whole mindset though. It makes you appreciate things others don't. My family always meant a lot to me before, but this just exacerbates your love and loyalty. It also makes you very straight to the point. i don't have time or energy or patience for bullsh*t anymore. Honestly. Well, Charlie has been napping so I will update later if possible.

(I had a high demand for pictures. I was so excited about being able to hold him yesterday that I didn't email myself the pictures!! The last one is my absolute favorite!)

The most beautiful little boy in the whole world <3