What's with all the screaming? I blame the grandmothers...

I posted last night's blog in the middle of a 4-hour screaming and crying fit. We got home around 12:45 in the morning after Emma finally screamed herself to sleep. And I mean SCREAMING, not fussy, not whiny, but blood-curdling, diversions-aren't-enough type of crying. Tonight was better - only an hour and 15 minutes. But this is NOT our daughter. When and why did she turn into an unhappy, screaming baby??

I blame the grandmothers. For some reason, the grandmothers have had custody of her in the afternoons, and they're sabotaging us. Whatever they're doing with our daughter in the afternoon is turning her against us at night. My sweet husband came to the hospital today and worked about a half day from Emma's room. After last night, we both felt more comfortable with both of us being there for Emma and to talk to the wound care nurse and Dr. Troup when they came by.

I say these things lightly, but I honestly have been ready to break down because there's not much we can do to try to make things better. Plus, like I've said a million times, she's got lots of actual medical problems, so we KNOW something's very wrong to make our happy baby miserable. And consider this - I've seen her get blood taken 3 times and Russell's seen her get a shot; she did not cry at any of this, and she only flinched at the shot. So whatever's wrong now is REALLY painful.

I have a theory on last night's issues: one is gas because she apparently was really tooty this morning! The other is annoying to me because I tried to address it. I told the nurse that I saw some brownish-red smudges on formerly clean blankets in the general vicinity of Emma's IV hand, and she had dried blood on her knuckles. The dried blood could have been from when they put the IV in, but when I questioned the smudges on the blankets, the nurse felt Emma's hand. It wasn't wet with blood, so she blew it off. Lo and behold, this morning the next nurse came in (who is my FAVORITE by far), saw the blood on Emma's hand, pushed on the IV, and "it" came flying out. I don't know if "it" is the IV catheter or blood, and I didn't ask. She confirmed that the IV was leaking and moved it to Emma's foot. I'm not a medical professional or anything, but I tried to tell the nurse that my screaming daughter was smudging blood on things...hmmm, could that possibly mean that the source of the bleeding was the problem?

Tonight, we think that Emma was cold (I'll explain more on that in a bit) and that she's constipated. They changed her formula yesterday, and it's not going well. I'll spare you the details on why it was changed and how it's not going well now.

This morning, the wound care nurse came in to examine Emary's open incision. She walked in, made a face, and said "OH DEAR! THAT'S NOT GOOD." That's not exactly what you want the wound nurse to say, considering that's all she does, every day. Emma's open incision has some serious scabbing around the edges and starting to come across the middle. Those of us with no medical background would think this is a good thing...and we'd be wrong. Mostly. It's really both bad and good. It's bad because it needs to be gone before the skin below it can begin to granulate and grow back together and grow to the muscle underneath. It's good because that means the opening is beginning to dry out. When it was really infected a few days ago, there wasn't much scabbing because the infection makes the incision really wet. Are you grossed out yet? If yes, skip to the next paragraph. If no, read on. The solution is to put this gel/ointment all in the incision (it has drying qualities for the icky stuff in there) and around the incision on the scabs. The wound nurse said it would be two days before we'd really be able to tell a difference, and it would look worse before it would look better. The gel softens the scabs and makes them look like green boogers. Yes, green boogers. On my 3-week-old daughter's back. They'll eventually come off on their own in a few days and then the skin underneath can carry on with its healing. The wound should not get bigger, only grosser-looking for a little while. THEN...HOPEFULLY...we'll see some progress. To cover up this booger gel, Emma has to have some sterile gauze pads placed on it, taped to her skin, and then covered with a mesh...well, tube top basically, that goes all the way around her midsection. All this stuff is changed twice a day. Oh, and there's a second cream that's put on the healthy skin around all that stuff to protect it from being affected by the booger gel. Here are a couple pictures. First of all, notice how completely exhausted I look. So if I don't return your phone call or email, please don't take it personally - I'm barely making it! The other picture is more up close so you can see Emma's first tube top. This is why we thought she might be cold earlier - she's really not wearing a lot of clothing here. Oh, and sorry the pictures are kinda grainy - we didn't use the flash because Emma was actually calm for a brief moment.





They cultured Emma's incision and found a new and more aggressive type of bacteria growing in it. Great. I'll say it AGAIN - the day wouldn't be complete with a setback. I told you to skip to the next paragraph if the one above grossed you out...sorry, this is pretty nasty, too. They've changed one type of antibiotic they're giving her.

Dr. Troup came in to talk to us for a while about what's going on. We asked lots of questions. After meeting with him, I guess you could say we're neither thrilled nor disappointed with his answers. So much of this is wait-and-see, and his hands are tied until this incision starts going places. He won't DARE put a shunt in if there's any infection at all. The incision doesn't have to be completely healed for him to do the shunt surgery, but it has to be on that path. Dr. Troup still doesn't feel that it's necessary to do a bedside tap of the fluid (at least not yet), but we also don't want to take our sweet time with the surgery. We'll have to learn a little about wound care when we bring Emma home, and the scary part: we have to learn how to feel Emma's head and figure out if her shunt is ok for a couple weeks. For example, if it feels sunken in, she's been sitting upright for too long and we have to lay her down. That should be interesting. It's not exactly like telling an adult when and why to lie down or sit up.

Thanks so much to all of you for your support - bringing meals, calling, sending emails, text messages, leaving comments and guestbook messages on the blog, and most importantly, PRAYING FOR US. We appreciate all of this from you, but none of Emma's healing and comfort for us and her can be accomplished without Him.