Our Christmas blessing!

Merry Christmas!
Love, Travis, Brittany and Micah

Micah's Home

They released Micah this afternoon around 4pm. He was keeping down his feedings. They are giving him 1/2 milk and 1/2 pediasure. Working up to full milk feedings slowly.

Thanks for the prayers!

Micah's in Lutheran

Please pray for Micah (and Travis and Brittany) as they admitted him to Lutheran today for observation. He should only be in overnight. Yesterday, he started throwing up his feedings (which they didn't think he was able to do). The Doctor wanted to get a chest xray of his lungs to make sure none had gone in there. Thankfully, his lungs were clear. They decided to keep him and give him IV fluids and pediasure to help give his tummy a rest. The Doctor thought it was a small bug that has been going around.

I'll let you know when he gets home and how he is doing.

Our little baby...

Our little baby isn't so little anymore! He's so big... I know, I know, I say that about every time I post, but it's true!
When we were down in Cincy, we were able to track down two of his (our) "friends". Neither could believe how big he is! We had a great time seeing our friends.
Micah has kept busy lately, with seemingly weekly trips to go somewhere! We are going to visit a friend or two in Ohio tomorrow, so pray for safe (sane) travel. We also got our next Cincy visit planned for January 19th. They certainly don't let us leave for long! This is, we think, just a meeting with the Hemangioma/Vascular Malformation team (yes, I just wrote that because it makes me look smart!) This group will decide what to do next in terms of surgeries/procedures. We are also waiting to hear from the feeding team to see when to repeat the study that shows his ability to swallow and protect his airway. I was going to put up some pictures, but the computer isn't cooperating. Maybe Friday!
We hope that you have a blessed Christmas season- the Hartman family couldn't be more thankful for little Micah, and for all of you!

A mixed bag..

The news was mixed.. First, Micah did well with going under and the procedure (the anesthesia and procedure took a half hour total). The doctor said the malformation has grown in his airway, but that it's not terrible (that he's seen a lot worse). They are going to start working on the mass on the inside and outside at 6-7 months likely. We are coming back in 4-5 weeks to meet with a team of doctors on what to do next. The good news is that his airway is stable and the trach isn't entirely necessary from an ENT perspective. We can't say whether or not it's necessary for protecting his airway, but the malformation isn't blocking his ability to breathe in a significant way.

The doctor commented multiple times on how cute he is.. we agree :)

Headed back to Cincy

Headed to Cincinnati today for Micah's thoart scope. Please pray for travel safety and good news from the Doctors.

Baby Shower Pictures

Back to Cincy...

Back to Cincy.. I say that with a deep sigh, kind of a "here we go again" feeling. We're headed back to Cincinnati Children's on December 10th (not sure if we'll leave the night before or stay the night after). It'll be fun to see people's reaction to see that Micah has grown over 2 pounds since we left, but I just don't want to hear what they have to say (barring a miracle, I suppose). He has a scope of his airway, it only takes a half hour. It comes with few risks, except the risk of general anesthesia. They'll be able to see how his trach is fitting, and how the malformation looks inside his airway. This will help them plan for the future surgeries.

Micah is doing well, adjusting quite well to being home. He's remained healthy which is a huge blessing! He's growing by leaps and bounds- he's now 10# 11 oz.

So if you're one of Micah's Cincinnati friends, let us know if you're working on the night of the 9th, the 10th, or the morning of the 11th.

Oh, I about forgot.. Micah is starting to crack little smiles. He's a pretty serious little man, but he smiles from time to time. They're real subtle, but it's fun to see his eyes light up and smile just a little bit. He's also trying to suck his thumb, but it usually ends up that he- A) chews his knuckle, B) chews his arm or C) pokes himself in the eye with his thumb. He's getting closer though! He doesn't really take a pacifier anymore, and the therapists want him to do something with this mouth, so yes, we're advocating thumb sucking!

First Steps (new therapists) came out and evaluated Micah... The whole meeting was summed up by one of them saying "How do you feel about having a lot of therapists coming by?" To which we replied, "Bring it on!". He will probably qualify for physical therapy and speech therapy, probably occupational therapy as well, but we'll see. Bring on the "girlfriends" (although we miss our Cincinnati girls a lot!)

Anyways.. we can't believe it's December already... Can you?

Oh, goodness...

I have never been so thankful on Thanksgiving in my life. We took Micah back to see Dr. Wheeler (the high risk doc in FW) this week... and Dr. Wheeler put it so well, that Micah is a miracle baby. There were so many twists and turns, but he's here, and we couldn't feel more blessed. Our God is so amazing... I don't know how someone could see this journey and not know that God had this all in his plans. Today, I'm just in awe of where we've been this last year, and so thankful we are all home and well.

Here's the sweet baby... by the way, he's 10# 5 oz now... Such a big boy. (Except that now they moved him from a premature baby growth chart to a normal one, he's about 5% for height, and about 10% for weight.)

Micah meets his cousin

Better Video

This is a much better video

Video of Micah

Not the greatest video, but I wanted everyone to see how active he is now. It does get lighter as it plays. Hope it works.

Adjusting to home

Micah's homecoming went great! Mom and Dad are adjusting also. They are very Thankful to have him home.

MICAH'S COMING HOME!!!!!!!

Micah is coming home tomorrow!!! We are so excited to take our little man home. We got our wish to have him home by Thanksgiving.

We are asking that only our parents and siblings come by tomorrow. After that, please call before coming over. Also, Micah can get sick very easy so make sure you are well before coming over. Please be extremely cautious bringing children over.

We can't wait to be home!!

Just another day in the NICU...

Things are going pretty well. Micah is doing well, and getting stronger. He's starting to be able to lift his head when he's on his "belly" (it's pretty complicated doing so because of the trach). Physical therapy is going well... speech therapy hasn't been as good lately. I'm not sure if it's the new people (unfortunately he sees three different speech therapists)... or what it is, but it has't been going as well as it had been. You win some and lose some, I suppose.
We've been enjoying having visitors, and was pleasantly suprised to have someone stop by today! Travis is at work today, so I'm getting a feel for being by myself with Micah. (Didn't get lunch till 3:30... I'm sure that'll happen more than once!)
We're still waiting... and hoping. Meanwhile, the little man grows... He's 9# 12 oz now. He's grown everyday but one since we got to Indiana! It's amazing how big he is!
Have a great day...

New Pictures

My new bed, bath time, play time, and bed time!

Ho-hum...

Not much new going on.. well, I suppose there's a fair bit going on, but nothing too exciting. We picked a home nursing company and medical supply company. We met with the home nursing company and they seemed to think they'd be able to staff Micah's case with no problem. Yay! The medical supply company is bringing by their supplies to the hospital so we can make sure we know how to use it. Other than that, we're just waiting- the powers that be at the hospital are doing everything they can to get us out of here.
If you would pray that we would be out by thanksgiving, I'd appreciate it. That's really what I want more than anything... I can't imagine having Thanksgiving without him. Thanks.

It's Here!!!!!!

Wondering what all the fuss was about my birth certificate.

It arrived this afternoon without any problems. Now Mom and Dad can hopefully finish all
the paper work so I can go home to my new room. Thank Great-Grandma Barb and Mandy for waiting for it to arrive at my house.

Another cool thing was they gave me a big boys bed again. Mom says it's big enough for her to sleep in, but I like it.

Thanks for all your prayers this week and visits.

Love,
Micah

AHHHH!!!!

Alright, the patience is gone. Gone, gone, gone. Micah's birth certificate could be lost in an abyss somewhere between Cincy and nowhere! Okay, so that's a little over dramatic, but still. We finally found where his birth certificate should be, and they told me that it may take 14 WEEKS from when he was born until when they have it on file. And WHERE might it be? (Seriously) God only knows. They cannot tell us if they have it, they have to let us know BY MAIL. We have like, 20 days to finish filing with Medicaid. If we don't get it because it takes them 3 1/2 months to get his birth certificate, I'm going to punch someone in the nose (okay, not really).
We're not sure there are any strings to pull at this point.. let us know. We've already had the office of Governor Daniels, Senator Dillon and Representative Bell calling on our behalf to the medicaid office. Kind of restores your faith in politicians a little, yes? We appreciate their work for us very much.
Well, the internet here is as testy as I am, so I better go before I lose it entirely.
Take care!

Micah is doing great

Micah is doing great. He has now meet with the speech therapist here at Lutheren. She told us that Micah was getting a pretty good suck. It is not quite as strong as it should be for his age but it is close. She also said that it appears that he is sucking and swallowing. They cannot tell for sure until he would have another fees test. It was good that Micah decided to cooperate with his therapist on her first day working with him.
Britt and I on the other hand have spent a fair bit of time today trying to jump through hopes to get Micah home. I talked with our insurance agent yesterday and found out that it is impossible for us to add any sort of home nursing care to our policy. It is not even an option if you buy your own insurance, at least through Anthem. I then spent over an hour on the phone with someone from Medicaid, they needed verification of a bunch of different things. They still have a couple of things they need us to get to them before they can continue that process of getting us approved. We also had a little trouble finding out who in Cincinnati has Micah's birth certificate ( there are several different groups in Cincy that could have had it on file). I called the most logical one, the county office, but they did not have it because they do not deal with deliveries at Children's Hospital. I was also told that babies are not delivered at Children's. I told her that there are special instances in which they are. I really wanted to tell her that I knew where my son was born and that it was Children's. We believe we have located the city office where Micah's birth certificate is and now we need to get it on its way to us. We hope that it does not take too long.

Our patience is wearing a little thin at times so we still need lots of prayer.

Micah's new tube.....

On Saturday, Micah decided to pulled out his G-tube. So on Monday, the Doctor's put in the button tube. I think you can see it in the picture. They were going to put this in, in December when he went back to Cincinnati for more test. But Micah couldn't wait :). He did well with the procedure. All he has now are the leads to monitor his vitals.

They met with the new physical and speech therapist this week. They will start were Cinci left off. He hadn't lost any movement in his arm or neck. YEAH!

Britt and Travis are trying to establish a new schedule. The appreciate all the visitors this last week.

This is for Ang

Geez ang... I didn't get to say good bye and i was so sad. So i decided to wave good bye because i knew it would make you proud. I miss you!

Love, Micah

(he seriously did this the last day at childrens)

Micah's trip to Indiana

Micah arrived back in Indiana in style. Hope he doesn't get used to this type of transportation. The trip home went very smoothly. Brittany said he was grumpy for half of the trip. I would be to, since they didn't give him his 8am feeding. He is all snug in his bed at Lutheran Hospital NICU. Please let Brittany or Travis know if you'd like to visit. They would love to see everyone. (Reminder, not to come if you think your not feeling well).

Britt's access to the internet will be limited to the time their at the hospital. So updates will be a little less often.

Thanks for the prayers,

Grandma Brenda

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!