The moment we've all NOT been waiting for...

...an infection. Yep, Emma's incision is infected. Well, that's what my mom and I heard from Dr. Troup, while a nurse heard something else. He thinks it is or could be (however you want to construe the conversation) a surface infection, so Emma has to be on IV antibiotics. Russell and I spent an hour waiting for the nurses to get a PICC line or an IV in her tonight. The PICC line didn't work, so now she has a regular IV, which doesn't last as long as a PICC. This comes as no surprise to us, as they've had a tough time with Emma's IV's from the time she was born. When we finally got back to her room after they worked on her, she was screaming because she was hungry, she had dried blood all over one hand, and I saw a blood-soaked guaze pad that they hadn't cleaned up yet. No mother should ever see her child's blood like that. I didn't feel sick, but it made me want to cry for days for my baby. We've heard that most babies on these antibiotics are on them for 10 days. Let's assume she goes home 11 days from now...that will be a total of 27 days in the NICU. We've had a number of people comment on how much worse the incision looks today. We've gone from a dime-sized hole, to a nickel, and finally now a quarter, with the addition of the separation of the incision out to the side of the hole. Again, perspective - this is on someone whose back is only about 7 inches wide. Don't get me wrong, I certainly don't want her to have an infection, but the plus side is that we've been making backward progress for a full week now; if she has an infection that is preventing some forward progess, we should see results from the antibiotics in a couple days.

Dr. Troup has now put the shunt surgery on the back burner because there's no way he's going to do anything until this back situation is MUCH more cleared up than it is now. Best case scenario (which, honestly, is NEVER case scenario for us so far), the incision starts to turn around tomorrow and we could have the shunt put in...maybe Thursday of next week. This estimate is mine, not his, so I could just be full of it. If he starts to feel that we need to move on the fluid on her brain, he'll do a bedside tap, like I described in last night's blog.

The new disaster of the day (because, hello, no day is complete without one)...diarrhea. As for the diaper rash, the 3 wonderful nurses on the hall tonight were working on her, running a tube into her diaper to blow pure oxygen on her rear. Can you even imagine how that feels? Cooling, comforting, chilly? In addition to the great nurse actually assigned to us, the other 2 wonderful ones said they'd keep an eye on her, too. One of them even has a myelo (abbreviated medical term for the specific type of spina bifida Emma has) kid, as well, and we've spoken to her before about her experiences as a parent. It just feels good to know that someone is there with Emma who specializes in myelo kids in the NICU because her own child was one.

Speaking of nurses, I think I've straightened out the nursing situation. I spoke with a nurse supervisor, and she is VERY concerned about our problems. She is taking charge of our specific assignments, addressing problems with some of the bad nurses we've had, and is going to be checking on us very frequently. She was horrified at the nurse who jacked Emary's legs up over her head and asked to see the picture. She tapped my camera and said, "I'd hold on to that picture." Hmmm, interesting, isn't it? She was so very apologetic and embarrassed by our level of care thus far. I don't want her to be so embarrassed or anything, but looking at a solution to our nursing problem finally something feels like something went right today.

So far, we have been praying for pretty general healing - healing of everything about Emma's spina bifida. Here recently we've found ourselves still praying for that healing, with the addition of intense pleading with God for specific things - healing of her incision and her diaper rash. I'm pretty sure Emma had a crying jag tonight because she was pooping on and off for about 10 minutes. If you saw her little hiney, it would make you cry, too. Ok, so that makes prayers for healing of the nerve damage and spinal fluid complications from the spina bifida, the diaper rash, the diarrhea, and the incision. Now add to that a prayer that the IV will make it for 10 days (this rarely happens) without having to be replaced and a prayer that she won't try to yank it out or bend her hand too much. Right now they've kind of splinted her hand so that she won't bend it and put stress on the IV. A nurse told us earlier that babies heal SOOOO much faster than adults. That may be true, but adults are also aware that if they need to, they can keep certain areas of their bodies stationary. Babies actually do the opposite - they wiggle whatever hurts or is uncomfortable. Here's a picture of her pitiful little hand with the splint.



Earlier my mom said that she feels as if a weight has been lifted off her shoulders because Emma is now being treated with antibiotics. I agree that only good can come of this...well, maybe only good SHOULD come of this. The way things have gone for us so far, I'm trying not to make any assumptions. However, I'm now worried that having an IV in for 10 days just won't work out - 10 days is a loooooong time. How can our baby possibly be ok with an IV for 10 days?!

One bright spot in the day was that I got trapped in the giant revolving door in the lobby of the hospital - I'm not being sarcastic; it really was funny. Russell was picking me up to eat dinner, and he was waiting in the car right in front of the door. I go beebopping through the door, walking, walking, and then the door just stops turning. So there I am, looking at Russell through the glass, and I can't go anywhere. He was laughing so hard that he couldn't get out of the car. I started laughing hysterically and couldn't stop, even though it was hurting my incision SOOOO badly. Russell finally got himself together enough to walk up to the door to get it turning again. Could I have possibly been too short to keep the door activated? Surely not...

After all this, at least our daughter's still cute. Well, WE think she is. This shot of Emma is what my mom and I captioned, "A Formula Hangover."