Sorry it's been so long...

I know it's only been a few days since I posted, but a lot has happened since Emma's been home. God has blessed us with so many loving and caring family and friends (and people we don't even know!) who are keeping up with the blog...so here's the big update since we've been home.

Yay for a baby sleeping through the night! Emma was beginning the trend when we left the hospital, and it has continued since then. I think the least she has slept was 7 hours, and the longest was 9 and a half hours. It helps that her formula is really, REALLY thick with all the rice cereal now. For all you moms out there who are familiar with rice cereal and its magical powers, we have to put 1 tablespoon of rice cereal with 1 oz of formula. That essentially makes grits.

Emma's diaper rash is still pretty bad, but not as bad as it was on Wednesday and Thursday. Thanks to all of you who left comments or signed the guestbook with diaper rash suggestions. They've been so helpful! I've tried a few of them, and we're working on getting that diaper rash whipped. So far, though, I have to say that the best thing is something called Ilex...but only if you use it right. We can thank Jean Brown at the Shriner's Hospital for this stuff. She is the spina bifida nurse who is the official on bowel and bladder control issues. She even speaks across the country on it and has written a book. The only pharmacy I've found that can order it is Bi-Lo. It's basically this thick, thick paste that goes on and stays on. If you try to peel it off, it'll peel the top layer of skin off. So when Emma poops, it stains the Ilex and she still looks dirty, but you just keep blotting it until the wipe comes away clean. Then you put more Ilex on where it has started to erode or clump away. I know this sounds gross and unsanitary, but this stuff WORKS. I think it works because the skin underneath never ever gets exposed to moisture. The only time we leave her hiney bare is if we're airing it out. So hopefully we can stay diligent with the Ilex and with some of the other suggestions you all have given us and we can beat this thing! With everything else that Emma is suffering through, we shouldn't have to deal with diaper rash, too.

Emma's choking spells have gotten significantly worse. From Thursday morning to Friday morning, she choked 22 times, and it's only gotten better by a couple episodes a day since then. The episodes have been really severe, too - lips turning blue, face turning blue and red. Then they're sometimes followed by spitting up a lot of mucus. We think that maybe the cold she's fighting has caused the increase in choking...and I can guarantee that's what a doctor would tell us. Speaking of doctors, Emma has a follow-up appointment at the pediatrician tomorrow. We also have an appointment with Dr. Troup on Wednesday. I'm not sure what he's going to tell us on Wednesday. He may just say, "Let's come back in 3 weeks and see how we're doing," or he may say, "Let's schedule another swallowing study for a week from now." We have no idea.

Emma's right foot and leg are still really swollen, and we still don't know why or what to do about it. We prop it up at night with a rolled-up blanket (I know - the horror of leaving a blanket in the crib with a baby! She's fine, trust me.) and hope that it gradually gets better. That's something we'll mention to the pediatrician, even though Emma's already had an ultrasound on it.

Her gas pain is getting a little bit better, but she still has her moments. Actually, as I type this blog entry, she's pretty darn upset. I think it's gas pain, but I'm not positive. It's getting increasingly hard for Emma to breathe, and crying doesn't help this. Her breathing is very shallow, so she takes a lot of breaths, and it's very labored. And heartbreaking. Listening to her closely makes it feel like I'm struggling to breathe, too.

Russell and I made it to church this morning while my parents watched Emma. Oh, how wonderful it was. Our church family has been amazing through this experience. Emma has had many visitors since she's been home, and it's been great to be able to share her with our loved ones. We, of course, have to prepare visitors for how loudly she breathes and for the possibility that she could choke while someone is holding her. And anyone holding a baby runs the risk of being spit up on.

Russell's parents spent the night here on Thursday night, and my parents spent the night here last night (Saturday night). They stayed in our bedroom across the hall from Emma, and Russell stayed in our guest bedroom, far, far away from the baby. There is no greater blessing than parents willing to do this.

God has taught me some very valuable lessons since we found out about Emma's initial diagnosis of spina bifida in October. Since the most recent developments about Emma's ability (or lack thereof) to swallow, I've learned even more. There's a verse in 1 Corinthians 1 that says that God comforts us in order that we are better able to comfort others. I'm not saying that I'm going to become a counselor or anything after this, but I truly hope that God will use my experience as others deal with tough things in their lives.

I'll leave you with a few more pictures.



She looks like she's waiting for her next spa treatment in her bathrobe. Based on that crazy hair, she needs to be waiting on a cut and a style.