Wednesday

Today has been long. Katie was here with me all day, which made it tough to be with Sadie as much as I'd like to be, but what can you do? I have two kids, and I can't go long without Katie - we both get too upset. She's been all tears and hugs... I know it's really hard on her. Poor baby. No kid should have to go through either the patient or sibling end of this. It absolutely sucks. Her birthday is next week, and most of it will have to be spent in the hospital, I have the feeling. If any of ya'll have good ideas on neat things we can do throughout the day, please let me know! I want to make it as special as possible. We're going to have her party as planned no matter what - we'll have to get family to come and stay so both Jason and I can be there for it.

Sadie is doing fairly well. She is off the epinephrine now, which is good. Today they did a reversal on the paralytic to see what happened, and she's started twitching and moving a bit. I saw her eyes for the first time. It's a scary way to see them (very drugged looking), but all the same, I saw them and was thrilled. I have such mixed feelings seeing her move - I WANT to see it, but at the same time, I don't. I don't want to think that she could be in pain and that we don't know it. Or that she's sad, hungry, or wanting comfort. There's just no way to know how conscious she really is. They've kept her fentinal (pain killer) really high, but she responds to my voice (via heart rate or bp), so I know she's in there.

They finally got the new arterial line in, which they'd been trying to get for days now. The line through her belly button was removed, and she can now have breastmilk pumped in. So it's good to know she's getting some nourishment now. She also had another transfusion today, which has made her nice and pink.

On a fun note, one of the nurses washed her hair two nights ago and left it sticking up all over for us to see. It looked like a dandelion poof - way too cute. Then the next nurse put it into a mohawk style. Since then I keep messing with it, and it stays in a mohawk. It's too funny looking. :)

The surgeon has recommended, against the other dr's advice, that we don't need to do a preventative dialysis tube, so I have no idea what is up with that. I talked to this evening's nurse about how frustrating this all is - not knowing enough to fight people on what we want; not being able to have a choice in it if we did know. You all know what a complete control freak I am (yeah, I admit it), and I hate not being able to have a hand in what happens with Sadie.

Surgery is still on for Friday morning. They better not bump her again, or I think Jason will be kicking some butts. Seriously. I think he's even more frustrated with the postponement than I was. I'm happy to see that she's come along so far, and has gotten so much more stable (as is he), but I'm sick of waiting, too.

I've met another couple who has a very serious heart-baby case, Jeff and Cathy. Their little girl is named Madison and was born with her left side of the heart not fully developed. Their case was like ours - they didn't know until after she was born, and it took hours to find out. They had surgery 2 days ago, and she came back on ECMO (a heart-lung bypass machine). She's doing pretty well though, and came off it today, but has a long way to go. So keep them in your thoughts and prayers too. They need it as much as we do.

All in all, a good day, I guess... I'm just getting worn down and more emotional with each passing day. Continue to send your positive energy our way - we need all the energy we can get at the moment! Thanks!!