A good day!

Travis was able to go back home today to party on at the youth/parent picnic. He had a great time :)
Micah got his feeds consolidated to 30 minutes! One more step and he's golden! He's done great with them so far. We had some concerns about his trach site, but all seems well. I had to change out his trach in a somewhat rushed manner on Saturday night because it was becoming plugged up... not the way I hoped to do it for my first time! All went well, and that was one more thing to mark off the to-do list.
Had a great visit with friends today.. It's a lot of driving to not stay here for long, but it was SO nice. Thanks, ladies. :)

Mmm..mm... food!

Micah is getting his feeds consolidated! :) Yesterday they ran three hours worth of food (65 mL aka about 2 oz) over two hours. Today, they're going to run the ENTIRE 2 oz over an hour. Yesterday he tolerated his feeds perfectly! They check what's left over in his tummy and there was nothing at the end of the three hours. So we hope today that it goes just as well. After that, we basically have one step left before his feeds are where they need to be.
On the pictures below, he blue tube is called a trach mist collar. It is attached to air and water, and humidifies the air he breathes. He's on that most of the time, and will be on that at home too. He has what's called an "artificial nose" that pops on top of his trach. That traps the warmth and humidity that he produces, and he breathes through that. He can be on that when he's awake, up to a few hours a day. It's nice because it's portable.
Micah is doing pretty well.. The doctors are very pleased with how he's doing... We are working on our checklist of things we have to do so we can go home. Then we wait!

A first and a nice sleeping schedule

Micah tried out a swing today. The first time he wasn't very fond of it, but the second time he slept for HOURS. He's getting a good sleep schedule established with sleeping lots during the night and a good 3 hour nap in the afternoon. Woohoo, keep it up, Micah!

Here's some pictures! They are cell phone pictures, so please excuse the quality.

It's been awhile!

Sorry that it's been a few days... there's just not too much going on. He's just hanging out at the moment, waiting for them to start working on his feeds (which starts tomorrow or Saturday). No more news on the going home/getting a new room front, because the lady in charge has been out sick.

Just wanted to mention something neat... Most of the meals here are provided by church/civic groups, but what I find most interesting are the businesses. Corporate generosity isn't something you see much of anymore, so it's really impressive that these companies are giving. The most impressive by far is 5/3 Bank. They do a meal almost every week, this week they've done two. It's not easy either, this building has 81 rooms that are 95 percent full most of the time. That's a lot of time and money! Some other impressive companies have been Best Buy, McDonalds, and Panera Bread. Panera gives away whatever leftover baked goods they have every day to an organization that could use it. They said it's so that it doesn't go to waste, which is awesome. So if you're out and about, don't be shy about supporting these businesses, they're up to lots of good!

Woohoo!

The discharge coordinator came for a first visit today, and boy was that exciting. She sets up everything Micah needs to come home (medical supplies, doctors visits, nursing care). We're pretty sure we will have a nurse at the house at least a few days a week. That's a pretty strange thought, but I'm sure it'll be nice. We have to find something in the vicinity of our house that does that, so if anyone has any ideas let me know. We got a heads up on a doctor for Micah, someone that Linda knows takes her kids there. We were also offered a private room for Micah until he goes home, which would be nice as well. 6 weeks of being with 5 other babies all day long is getting old. We're not sure when it'll happen, but it seems like it will. The room has its own bathroom, and a chair that pulls out into a bed as well as a desk. We think Travis will get more work done this way which is great! She seemed to think we wouldn't be here too terribly much longer, but it's hard to say. I'm guessing another 3 weeks, but we'll see.

Micah is 6 weeks old today! He's just over 21" and hanging out around 7 # 5 oz. He seems so big to us!

To answer the one measly trach question... How long will he need it? Well, who knows really. Dr. Elluru (ENT) seemed to think it wouldn't be forever, but probably a few years. It depends if Micah can protect his airway, and if they can get malformation under control very well. We hope by the time he's ready for preschool, but neither of us are holding our breath.

We were able to get Micah up today for the first time since Wednesday morning, and we were so excited! We held him for HOURS today... It was great. He had his first trach change, and all went very smoothly.

All in all, a great Monday. How often can you say that? God is good.

Pacing...

The nurses have let us know frequently that we're going to have to pace our visitors once Micah gets home, so we figured we'd warn you now. I don't know what's going on in Indiana, but the flu (regular and H1N1) have been exceptionally bad this year and of course they don't want Micah to get either one. Now with his trach he's even more susceptible than the average baby, since he doesn't have his first line of defense (his mouth and nose) to keep out the germs. So don't be surprised if we don't have him out much. The nurses also brought up the fact that even though he's over a month old, he's been in a very sterile environment and not exposed to many germs.

The one thing that was mentioned in rounds was HOME. They need to switch his feeds from continuous to bolus (consolidated eventually to 3 hours worth of volume in an hour or so). They can't start that until 2 weeks after his g-tube surgery, which would be this Friday. We also have to learn all of his trach care, which you better believe we will do as quickly as possible. His first trach change (take out the old one, put in a new one) is tomorrow at 6:30am. We're going to (try to) get up and be there.

We were talking about getting breakfast at the hospital and I said that I'd never been there for breakfast. Travis said he'd been there once, when Micah was born. The conversation continued..
Me: Do they have anything good for breakfast? What'd you have?
Travis: I had bacon and hash browns.
Me: That's not a meal!
Travis: (defiantly) It doesn't matter.

Okay, so it was funny in person, because Travis sounded like a little kid. We're both exhausted, which makes everything more funny... or annoying, it just depends.

doing well...

Micah is doing well today. They took him off the ventilator attached to his tube. He's doing very well off of it! He can hear himself breathing through the trach, and it wakes him up. Therefore, he's hardly slept today and he's a big grump. Now he's on a trach mist collar, which is basically a big blue tube attached to a water source that sends humidity his way. That helps keep the junk in his chest loose enough to be suctioned. It sits loosely at his trach entrance, not attached firmly or anything. Right now since his trach is so fresh, he's considered a critical airway, but after Monday we can get him out of bed and he can go back to his crib.
We were afraid we'd have trouble hearing him with a trach, but the rattling of the junk in his chest makes a ton of noise. So far he's not been able to make much of any sound past the trach, which hopefully will change as the swelling goes down. Micahs trach sits basically between his collarbones, and is about the size of a nickel with little "wings" that extend out from it. It comes up about an inch and a half from his neck. It will be awhile before he has the dexterity to pull on it.
Any other trach questions? Or feeding tube questions? There's a million things to mention, but I'll just answer questions as you have them.

We just wanted to say thanks to the church for the card shower. We've got about 40 cards from people in the church over the last few weeks. The picture in the previous post is the first batch hanging up in our room. We'll leave them up a few days and switch them out for more cards. We especially appreciate the notes from the youth (you know who you are! we miss you!) Travis has been working on plans for great things coming up, so just be patient!