I am going almost home....

YEAH!!!!

I get to go to Indiana and check out the corn they talk about!

Can't wait to meet everyone and get lots of kisses!!

See you soon!

Micah

Some mighty good news!

Micah is going to be transported to Lutheran on Friday! YAY! :) He is going to be "Lifeflight"ed to the airport in FW, then taken to Lutheran. Lifeflight is an airplane, not a helicopter like we thought! How exciting... We can't wait to see you all! And... Lutheran has slightly more lax policies on visitation, so we can have two different people a day see Micah (on top of us). Now, if you can squeeze your name in there among Micah's grandparents and great grandparents, good stinkin' luck. But anyway, it's all good news.

Micah is doing well today. He got his two month shots, which of course he didn't like. Really, though he did well with them. He got as mad as he does when they stick him for an IV or draw blood. He got real mad for about a minute, was whimpery for a few minutes, and fell asleep. Other than that, he was good!

While we will be sad to leave Cincinnati Childrens, we will not be sad to leave Cincy. The staff at the hospital are so good with Micah. We originally thought we would be leaving tomorrow, but it was pushed back to Friday... we actually needed the time to pack and say our good-byes to what's become our second familiy. :)

Anyways, feel free to party with us! Yahoo!

Long awaited Pictures....

1) Micah using his new pacifier skills

2)His bedroom. Lots of fun things to look at.

3)Dad, Mom and Micah

4)Micah showing off his halloween costume

5)Cuddle time with Grandma

Here's the ranting.. It's been a long time coming.

So this rant has been stirring in my mind for months, but now seems like the appropriate time. So here's the deal. Micah is doing fine. They'd let him go home if we could find a nurse to be at the house 8 hours a day. Why cant we? Our stupid insurance won't cover it. (They'll cover the 250,000+ to keep him in the NICU though). Our insurance doesn't cover home nursing care. Why? Because we had to buy our own. Neither of us have full time jobs, despite the fact that Travis works the equivalent of full time, and I work as well. So, we shelled out 1/4 (soon to be 1/3) of our income last year to buy insurance. We payed extra for maternity, waited the full year to get pregnant (you had to pay a year before using it). We played by the rules, yet here we are. The thing is, Micah didn't choose this. It's not his fault. We bought the best insurance we could afford (although there's not much choices, just the ratio of premium to deductible, and whether you want dental or maternity.)
The insurance system is broken. There shouldn't be a profit to be had. People should have to play by the rules, but they also should get the care they NEED. Especially children.. there's no reason this should be going on. Not everyone can find a full time job that pays for great benefits so they don't have to worry. Plus, what do you do when you feel called to do something else? We don't doubt we've spent the last few years where we should be.
It just doesn't make sense. We're not looking for pity, just understanding that not everyone has the insurance they need, or the ability to pay for the insurance they need. Give health care reform some thought.

A good weekend...

We had a great weekend. Grandma and Grandpa (Weaver.. although I when I say that I think of my grandparents) came to visit. Micah always behaves well for grandma and grandpa... They should come more often! Nothing new medically to report.. the medical rounds are pathetic on the weekend.
Micah got his weekly length... He's now 22 1/4" inches and 8 pounds 5 oz. He's a long skinny thing! He's doing well, and we're just waiting to see if we can get Micah transferred closer to home. We'll let you know when we hear something. We are hoping to get moved to "B" pod, and we are on the waiting list. "B" pod are individual rooms. There are three babies on the list before us (which means it could be 2 days or 2 weeks).
I'm sure grandma will have pictures to post soon.

Great day for Micah

Micah had two of his therapies, and he did great. He is showing more strength in his neck, which is awesome. The speech therapists do taste with him (dipping their finger/pacifier in milk and letting him taste it). Normally it creates a lot of saliva he can't handle, but he did really well with him. The speech therapist did 2-3 times more tastes with him than she's done before. It was really encouraging! We are so grateful for the therapists and how great they are with Micah. We know we'll be hard pressed to find therapists that are so amazing. :)
We will be glad to get out of this town, but we will miss our nurses, doctors and therapists. They keep our nurses fairly consistent, and his nurses are such a blessing. We know Micah is in good hands.

Please pray for baby Ellie (her mom is Deanna who replies on the blog). She's in the hospital with the flu and a high fever. Her two brothers have been sick as well. I know they'd appreciate it.

Outgrowing my clothes!

Micah is finally outgrowing his clothes! Most babies don't stay in newborns for 7 weeks, but Micah has. Micah is doing great. The doctors are basically ready to send us home when we get nursing care. We were dealt a HUGE blow on that front when we found out our insurance doesn't cover home nursing care. We have to file through some state waiver program, that could take 45 days! Everyone is frustrated and trying to pull strings. We haven't found out what strings they can pull. Needless to say, we're having patience problems... As an old friend would say, I'll just have to put my patient pants on. They're trying to see where they can move us to locally, if we'll be stuck for awhile.
The speech therapist is starting to teach us sign language to use with Micah. They want him to start learning signs in case he won't tolerate a 'speaking' trach in the future. So far it's basic words like mom, dad, sleep, milk, diaper, etc.
Micah is being a very good boy! We basically take care of everything for him that we are allowed to. The nurse joked she felt useless because we have his care down pat!
We hope you are all doing well... try to stay away from the flu bugs out there.

Getting bigger!

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!

A picture post for you!

Look at my cute cheeks!

Micah has nothing on his face! His surgery went really well which was a huge relief. It was delayed 3 1/2 hours which was no fun... no fun at all. Once he got downstairs, it was 4:45pm. They got him under anesthesia and surgery started about 5:05. They called us back to talk to the doctor at 5:5O. It went SO fast, way faster than the 2 + hours we were told. It went well and the doctor was pleased.

There's a lot of information we'll pass along in the next few days, but what's important is that he's doing well.

We have a few cell phone camera pictures to pass along. He's pretty snockered (I think that's what a nurse called it)... either way, he's completely sedated in these pictures because it was when he just got back... You can see the trach and g tube in one picture. He's got a lot on him in the picture, don't worry most of it's harmless.

Still Waiting

Micah is still waiting for them to take him to surgery. The surgery before him
was taking longer than expected.

We'll let you know when it's done. Keep praying,

Brenda

A date and time for surgery # 3

Well we just got word this afternoon that Micah will have surgery tomorrow at around 1:15. We have not been able to talk to the ENT doctor about the surgery yet so we have a bunch of questions still. We do not know how long the surgery will take, a standard case ( which Micah is not) takes about 2 hours. Hopefully we can talk to a doctor tonight to get some answers but if not they will have to be by in the morning because we have not signed the consent for the surgery yet. Please keep us all in prayer as we go through another surgery.

Oh good grief...

Travis had a handful of mike and ikes and I asked if I could have one. He said "sure" and I asked which color he wanted me to take. He replied, any one you want. I put my hand out so he could give me one. He dumped one into my palm, and quickly said "no, you can't have the red one" and took it back. But then he gave me two pink ones, so I guess it's okay.

I suppose this is the type of thing that keeps us sane.

What doesn't keep us sane is when doctors is when say that his surgery is going to be the 16th. Every doctor we've talked to said that that's entirely unacceptable. They're going to try and do better. We were supposed to get a date today, but that didn't happen. If he had to wait until then, he'd be sitting there making no progress on anything, because of his vent. We can't handle being around here for another week doing absolutely nothing.

Micah is doing really surprisingly well. They got him up to full feeds as of 6 am this morning. He hasn't had morphine for the last 24 hours. He's doing better than I would do. I got to hold him tonight, which was great.

Sometimes we get really frustrated (because honestly, who wouldn't at this point) but we know we have it a lot better than some. It could be a lot worse. There's a set of twins that could use some prayer. They were about 1 1/2 pounds when they were born, and one was stable enough to bring to Childrens, but the other is still at another hospital. The one at Childrens is in our "pod" and isn't doing very well today... his name is Alex, I don't know what his brothers name is. "Not very well" is a relative term... everyone in the ICU isn't doing "very well", but doing "not very well" in the NICU is another thing. Considering this, we think we're pretty lucky.

Here's our sweeties one month handprint. (he has big hands!)

He's now 21" long and 7 pounds 3 oz. His weight went way up after surgery, but I think this is pretty accurate. He's getting so big!

Party on!

(From Micah)
Dear friends and family,
This morning mom and dad came and visited me, so I stayed wide awake for them for a whole hour! I was happy, so I just looked around and made strange faces at them. Today, they're going to start feeding me in my belly! It's been weeks since they've fed me in my belly. Boy am I excited! I'm doing so well after my surgery that they're stopping my morphine drip and only giving it to me when I get really grumpy. They took my blood this morning, which I didn't like.. but they found out that my red blood cell count was still really good and that my oxygen levels are really good as well.
It's a good day! Hope you have a good day too!
Love and kisses,
Micah

A little better...

Micah is doing pretty well. He's flying high on his morphine this morning. He's actually on a "sissy" (as the resident said) dose of morphine and is doing really well. His incision and tube look like they should at this point. He required another transfusion last night, because his red blood cell count was low (again.. this is the 5th time). They're hoping it's just because of the complications from surgery and that he's not having any more complications. They'll check his levels at noon today, and we hope they stay up.
I think we're going to venture out on the town which is an interesting proposition in this town. Especially since we're trying to find something new. We've established that we can find Kroger (although it's the ghetto kroger we've been told). and Walmart. We're going to try to find Meijer, Target and IHOP.
We appreciate the cards and the prayers this week. It's been a long week and we're both wishing we were knocked out on morphine as well. :)
Travis just whimpered "it's the camp mack festival." I whimpered in return. This was my goal initially to be home for. Somebody better enjoy some good food for us.

Surgery number 2

There's a LOT of information to pass along about the surgery, but I think I'll try to hit the high points. It's not the best news, but we expected most of it.
With the lung scope, they found that his malformation had expanded significantly into his airway. When he was born, it was just little dots that didn't extend into his airway... therefore he will definately need a trach. The malformation is above where the trach would be, so that would secure his airway. The plan for the trach is next week, probably towards the mid-end of the week. The docs still think the ability to suck/swallow is something he can learn, but will be a long process. The pulmonary doc said his lungs look okay.
The g-tube surgery wasn't too smooth. On top of the tube placement they were planning on doing a procedure that wraps his stomach around his esophagus. When trying to detach his stomach from his spleen, the spleen suffered damage. It took quite some time and quite a lot of effort to get the bleeding under control, but they were able to save his spleen and stop the bleeding. The procedure lasted a good extra hour or two because of this. They were able to insert the feeding tube with little trouble. They gave him lots of blood, plasma, etc to get the bleeding under control.
Unfortunately it was a pretty bumpy surgery, but Micah is back in his bed and doing okay. They're giving him morphine so he's pretty zonked, but he still is a bit feisty.
We're just glad it's over for now. Trach next week though. Good grief, poor kid. The good news is that when the trach is stable (which takes time), that's the biggest hurdle to clear to getting home. Which is a huge relief.

Surgery done

Brittany just called 3:45pm. Micah's surgery is done and he is doing fine. She will write later tonight on the details of the surgery.

Thanks for the prayers,
Brenda

Surgery Time changed

They took Micah back for surgery early. Brittany texted me at 10:15 am
that they came for him. Please keep him and the Doctors in your prayers.
Brittany will let you know after it's done.

Grandma Brenda

Surgery tomorrow!

I can't speak for Travis, but I'm getting pretty nervous about the surgery/procedure tomorrow... Anxious to see what they'll find out. The first part will be what they call a "micro L and B". Basically it requires using a little camera to check out the airway and lungs. The second is a gastronomy, where they place a tube in his stomach for feeding and medication. Between the two, it should take about 2- 2 1/2 hours. They'll take him down to anesthesia between 11-12, and the procedure will be around 12:30. We can't believe he's only a month old and already going in for his second big surgery. He's a tough little squirt, but you can't help but feel bad for the little guy. We're trying to hold him lots today, since it'll be awhile until we can get him out of bed. He also has required more blood to prepare for surgery (which is incredibly frustrating because they gave him blood about a week ago... waiting to talk to a doc on why that would be necessary.)

We got more cards today... I think someone was up to something at church.... but we're loving it. We put all our cards up in our room. We get so many that we have to change out our board frequently! We also put one up at the hospital every day.