Tell that doctor I'm not taking this baby home until...

he changes her formula to something that won't cause diarrhea that's going to run all over her wound dressing. These are the words that I spoke to two nurses and a nurse practitioner. They all agreed - the formula Emma has been on is doing something nasty to her intestines and causing diaper rash to boot. Any of you with kids knows that when babies have diarrhea, it goes all over their backs. Well, we just can't afford that with an open wound, even if it does have a dressing on it. The NICU doctor we've had the last couple of weeks told the new doctor that Emma absolutely, must, without a doubt, go to pure Enfamil (which is causing the problem) today. Dawn, Dava, the nurse practitioner, and I pitched a fit about it. The nurse practitioner really stuck her neck out for us and made the new doctor mad, but she got the orders for the formula changed. The doctor threw his hands up and yelled, "Fine!" You know what, it IS fine, because we can figure the formula thing out later. In the meantime, we have to get her back healed up, and poop oozing into it isn't helping anything. The formula she's going on is called Neocate, for those of you who have been asking. Apparently it's pretty expensive, but we'll just have to get over it until we can get everything else all nice and healed up.

So that was the major crisis of the day. A side issue (which would probably be major on any other day) is that Emma was upset all through the night until 5:00 am. The wonderful nurse I blogged about last night, Dana, was so torn up that Emma was upset. Dana rocked her almost all night, and she felt so bad that Emma had a bad night. Emma was upset for a long time this afternoon and was essentially awake from noon to 6 pm. Now she's sleeping peacefully...finally. She's somewhat sleeping on the incline, but there's a big speed bump at the bottom to keep her from going ALL the way to the other side of the crib. But now the problem is that she still slides down...and curls up at the bottom against the speed bump.

Emma's back wound looks pretty good; I couldn't tell a huge improvement over yesterday. It had been days since my mother-in-law, Mary Jane, saw it, and she was amazed today - it's nice to have someone with a little different perspective than mine. MJ also felt like Emma's soft spot was even softer (which is good), but I've lost my perspective on it, too, because I feel it almost every hour to make sure it's not caving in now that we're making an effort to get her upright.

Dr. Troup came by when I was at lunch today, and Dawn wasn't in the room when he came by, either. Luckily, Dawn caught him right before he left as he was writing his orders for Emma. We are still supposed to keep her elevated (or try, at least - considering she slides right down any incline we put her on), and he's not THAT concerned about the fluid draining, but he just wants to speed up the process a bit since there was so much fluid before the surgery. Apparently he's a little disappointed, but not worried. Phew, relief.

My dad and Russell's dad can now come see Emma! Well, they can on Sunday. The rule since October has been that only the parents plus 2 support people can see her. Even then, only 2 people can be in her room at a time. But now that the flu/cold season is over, they're going back to the old rules, and 2 more support people are allowed back. I'm pretty sure my dad will be here at 7:30 Sunday morning as soon as the shift change is over. Seriously, 7:30. AM. Oh, and for all of you who want to hold her sometime in the next year or so, too bad. My dad will be. And he's a big man to contend with.

Tomorrow morning Russell, Mary Jane, and I are taking infant CPR. My mom took it last night. Apparently, a lot of NICU babies' parents are required to take it before the babies go home. Let's just say that some of the babies are here in the NICU due to lack of care issues. And the healthy general public doesn't just sign up for infant CPR...so some of the people in this class are the cream of the crop. I can't wait to hear some of the questions. Good example from when my mom took it: the most common thing that toddlers choke on is hot dogs. Cut up, sliced up hot dogs. One genius asked, "Well what if you take the skin off?" Ok, what if you take the skin off? It's still a slippery piece of food that a child can choke on...it just doesn't have skin now. Hopefully those types of questions will keep me awake for 3 hours on a Saturday morning after getting very little sleep for months.

Oh my gosh, I almost forgot something huge. If you're sitting down with your legs fairly free, concentrate on something. When you walk, you mainly use your quad muscles in your legs. So when you swing your legs back and forth at the knee, even though the lower part of your legs are moving, that movement is controlled by your quads. Now straighten your legs and pull them straight up...you DO use your quads for some of this movement but mainly your hip flexors. So basically, Emma has to be able to move her legs from the knees down in order to have a shot at walking. We know she can use her hip flexors but weren't sure about the quads. Today she was on her side and moving her straight legs up and down, so I held her hip stationary and bent her knee to see if she would use a quad muscle to straighten her leg from the knee down, while keeping the hip flexor still...SHE DID IT! And then she got mad at me for holding her down (she HATES to be held in place on any part of her body). She does have movement from her quads! She may still have to walk with some sort of assistance like braces or crutches, and once she gets older, she may decide on her own that it's easier to be in a wheelchair...but at least we know that God has blessed her with some movement. Hallelujah! We do serve a loving and caring God. There are some other things related to her bowels and bladder that I won't go into here that are already better than a lot of kids with spina bifida. Praise Him!