Uh-Oh

This is why I posted the ROP thing...Emily had a couple of bloody stools last night. They have stopped her feedings and put her back on IV fluids. They also started her on antibiotics for an infection (the most likely culprit). They took an x-ray and blood work and when they have the results of those, they will decide what to do.

I know I don't know much but the dr hasn't called me back yet and the nurses only know so much...I am praying this will be a small bump but my gut is telling another story. Remember all her problems with eating in the begining? This is the same issue. The intestines are one of the worst areas to have a problem with so I am a bit scared of the implications here.

Quick

I need to post quick before anything happens...this is my new strategy so it isn't so much negative. :) Em had an eye exam this morning and the report says: "The ROP appears to be REGRESSING!!!" Yipee! For those who need a translation: Her eyes are actually getting BETTER. She will still need glasses and probably pretty thick ones, but at least at this point, it looks like her vision was saved! PTL!! Thank you for your prayers and please keep them coming as we are not out of the woods with this one yet.

Frustrating Drama

Well, I was so optimistic the other day that I started thinking about the day Em would come home...and this is why we learn not to let our hopes get up too high...Em has been having a rough few days. She has been throwing up and desatting (not breathing) a lot since she got back. Last night they were talking about putting her back on the CPAP (ventilator that helps her breathe) and upping her oxygen. I've been trying to get my head around this and then, on top of it all, her doctor was switched today. I LOVED the old one and this new one got frustrated at me that I was frustrated. I felt like yelling into the phone: This is my kid, she was doing well and now she's not. I want some answers, get over it! Yeah, but I didn't. Oh, and then the nurse wasn't going to talk to me because they changed her ID number and didn't tell me so when I called in, I didn't have the right information. I had to put my mean face on (which wasn't too hard at this point) just to get through.

Anyway, they took a chest x-ray this morning and it looks fine and they took her blood and her hemoglobin and gases are fine as well so they didn't change her vent. I told them they had been taking 45min to feed her at the other hospital (different delivery system) and they started doing that today and she is throwing up less. They also have her on pepcid for reflux. And as it turns out, she is still gaining weight, so this should not have been as big of an issue as it became in the first place. It isn't a good sign, don't get me wrong but as long as she continues to gain weight, we don't have to panic. The desatting, now that is a problem, but it might be related to the reflux.

In other news, the three of us are settling back in at home but all still sick. We have been trying to get out every day for a long walk to clear out the lungs and have both been on bouts of antibiotics but we just can't seem to kick this. K has one sexy raspy voice though. :)

Also, we aren't ignoring you...if you tried to call or text while we were in pasadena, we had zero coverage where we were staying and our phones weren't even registering missed calls. Sorry. You may try now as we are home again. I am going to read other people's blogs so I can fill my mind with happy thoughts of other people's lives. And then I am going to read a book to my kid. Have a great day!

First Year

So I realized that I never posted K's set of first year pics. I had a hard time going through them all (cause we all know I take a thousand) so I finally just picked some to post.

This first one above is going to be her portrait that goes up on the wall in an 8x10. The rest of these were just for fun...







The faces of K.


Oh so very serious...gee, who does she remind you of? Take a little chub off and she is definitely daddy's little girl!

With the monkey...

Dad running her face through the tree...she thought it was very funny. :)

Going Home!!

I got a call from the dr this morning and this is what I heard: "I looked at her eyes this morning and they look good. She responded really well to the laser and second treatment. I don't anticipate her needing any more treatment. I called the drs at LL to let them know to follow up with her and I just need to see her one month after you take her home. She can go back to LL as soon as they can arrange transport."

Whew! What a relief...we can go home!!

Bottles?

Yep, that's right...two so far. We are trying to get her to start eating on her own and I got to feed her this evening. She gets down about 10cc (she eats 40cc) and then she just falls asleep...sucking is WAY too much work! :) For those wondering, she currently gets fed through a tube running to her stomach, called a gavage tube. She was wide awake while I fed her and looking all over, just wish I knew what she was seeing. I have never wanted to look through someone else's eyes before in my life!