Photos

Two posts in one day... amazing! I thought it was time to post some photos, since I haven't done much of that since before Thanksgiving.

I realize it's probably time for a real haircut, but I just can't bring myself to do it. I mean, he doesn't even have a tooth yet. But this photo makes him look big...


For some reason, Micah doesn't seem to like Mark trying to feed him some juice on a flat spoon (which is all he's getting by mouth, and only a little bit before he coughs). I think Micah gets intimidated because Mark hasn't tried this at Micah's eye level. First he gives him the lip, then the scream!

But only seconds later, he's smiling again.
Daddy and his boys for the nightly reading session.

Micah health update

We took a trip to the pediatrician yesterday because Micah was coughing more and it sounded sort of wheezy. As usual, by the time we got there he sounded just fine. But just to make sure, they did an RSV test since there are lots of cases going around our area and she was worried about baby's arrival next week. Fortunately, he does not have RSV. She also ordered a chest x-ray to make sure that there's no fluid in his lungs. He had that this morning and all looks fine. As you can see by the photo, it's a horrible contraption and trust me, he let us know that he was not fond of it.

So, we continue with the Nasonex and hope that his congestion goes away one of these days.

ENT visit

No quick fix offered, but we're going to try Nasonex for a month and see what happens. The good news is that his right ear didn't appear to be infected anymore so at least that's taken care of (though we have to finish this round of antibiotics). He couldn't see into his left ear very well, but that wasn't the one infected last week anyway. This doc commented on how small his little nasal passages were and that his tonsils were inflamed. He didn't bother scoping to check his adenoids because it wouldn't change his course of action, which is to try the Nasonex. If this doesn't help his congestion after a month (A MONTH???), then we'll have to see an ENT in Milwaukee to discuss surgery options. If things are still bad in another week or two, though, he might also add another steroid treatment to help with the inflamation. Another consideration is sleep apnea so he wants me to watch him sleeping (LOL... maybe the week after next when I'm up feeding his baby brother in his room).

I just want Micah to feel better. He had multiple bouts of gagging and coughing today. But even with all of that, he had a great 25 minutes with his PT today. He actually sat for a few mintues without using his hands. Missy was encouraging him to reach for toys and he did it and didn't tip over. But after 25 minutes he complained very loudly. "Age appropriate behavior." It's actually a good thing for him to protest. :-)

The frames for his eyeglasses arrived in his size today at the optician so I was able to see what they looked like on his little face. So cute! The lenses will arrive in a week. I'll post pictures when I can. I'll be in the hospital when his new glasses arrive.

New J-tubes (yes, plural)

In my previous post I mentioned Micah's congestion. Well, we are now on his third antibiotic for an ear infection (and possible sinus infection, though I'm not convinced of that). He's been throwing up every day. At first it was just in the mornings after it seemed he was trying to cough up the mucus junk that was draining overnight. Now he's doing it during other times of the day too. And by the way, this is likely the cause of him needing TWO new J-tubes in the past week because all the coughing/throwing up has dislodged the tube.

We had some major tube issues at the beginning of January. So combine those issues with the latest, and Micah has been under radiation six times this month. A J-tube is much more complicated than a G-tube. If he "just" had a G-tube and it came out, we would be able to replace it ourselves. But the J-tube has to be threaded through his stomach, pylorus, and duodenum, before being positioned a few inches into the jejunum. This process requires fluoroscopy so that the radiologist can thread a wire to the right position before placing the tube there. I've made jokes about Micah beginning to glow sometime from all the radiation, but it's really not that funny to me anymore. The amount of radiation he is receiving is of major concern to us.

And... it's 1.5 hours each way to Children's Hospital to get his tube replaced each time this happens. We can't get it done locally because Micah has a custom J-tube. He can't get a MIC-Key button until he's about 20 pounds. That would be a more "standard" tube and we could keep one with us to take to our local hospital and have it replaced there rather than driving to Milwaukee.

But those are just details. Really, we want our baby to feel better. He's miserable and sleep-deprived. He wakes up every 2 hours or so overnight because of his congestion and/or discomfort. And he has his coughing/vomiting sessions during the day and he's not napping longer than 30-45 minutes twice a day.

He sees an ENT doctor tomorrow who will likely scope him through his nose to check his adenoids, etc. Please pray that he will find a cause for Micah's congestion and offer a simple solution that will eliminate Micah's vomiting and discomfort. Please pray that we would all find a way to sleep as we're very tired.

Update on littlest baby: I had my last OB appointment this morning and the baby is doing great. After reading the ultrasound report, my OB said, "I bet you're glad you're delivering this one via c-section!" He is a good-sized boy already (estimated at 6lb6oz). But... his head and stomach measure in the 98th percentile. Just 8 more days...

Checkup

Micah had his one-year well visit today and he weighed in at 18lbs 5oz. Wow! That's great for him. He's tracking right on the 50% percentile for weight on the Down syndrome growth chart (that's basically where he's been since his heart surgery, barring the recovery period following his nasty GI bug back in early October). He just made it on the weight chart for a "typical" kid at one year (2nd percentile). He's not on the height chart for "typical", but at 27" inches, he's almost 25th percentile on the Down syndrome height chart. He's the opposite of our skinny minnie Nathan (who's 25th percentile on weight and 50% percentile on height). But he does have a big head! He's almost 90th percentile on the Down syndrome chart and he's 23rd percentile on the "typical" chart.

After one week on an antibiotic, it appears Micah still has an ear infection in one ear so we're changing antibiotics. He has been congested for almost two months now. The antibiotic probably won't help the congestion. After another week, if he still isn't sleeping well, I'm probably going to ask for a referral to an ENT to figure out what's going on inside this kid's nose. We've had the humidifier running every night in his room and spraying saline in his nose every time he wakes up (which is between 3-5 times every night). It's getting rather old and tiring. And he's not exactly happy having a stuffy nose all the time.

We have a referral to a private occupational therapist now, since Micah's OT through county services has been deployed to Iraq. The county is looking to hire someone to temporarily replace Becky, but until then we'll go with an OT over at the hospital. It's important to me that we make sure Micah is continuing to use both of his hands equally given the short fingers on his left hand.

Glasses for Micah

We saw a "new" pediatric ophthalmologist today in Madison (and it took a long time to get there with the crummy roads... many thanks to my mother-in-law for driving us there). Micah's far-sightedness seems to be a bit worse than the last time he was seen. This doc thinks there's a possibility that by putting Micah in glasses to correct the vision issue, that might address his strabismus (cross-eye) and eliminate the need for surgery. We're all for that!

So... anyone out there reading this who has experience with a one-year-old in glasses, please share your thoughts on what kind works well. There seems to be an option that wraps all the way around. Not very attractive, but the idea is to keep the glasses on his face and survive being tossed on the ground a lot, I guess.

On a separate note, I spent 8 hours in Labor and Delivery on Monday. My OB sent me up there after less than 30 minutes on a monitor. Baby's heart rate dropped significantly during a contraction and she wanted to make sure it didn't continue to happen. It only happened once more, but I did have an increase in contractions. So I ended up getting a steroid shot for baby's lung development (and the second shot yesterday). I'm also taking procardia to hopefully reduce the contractions. I'm 33 weeks along, and we REALLY want to make it to Feb 3rd for my scheduled c-section. I'll be 36 weeks then. Yes, even that is early. That's due to the complications I had with Micah's birth (I had a major uterine window and almost ruptured, so the docs don't want me to go into labor). Anyway, please pray that this baby would continue to bake healthily for almost 3 more weeks. Thanks!

Look, ma!

All of a sudden last night, Micah seemed to "get it." He figured out that he could put his hands on his knees and prop with them to sit (he can't put them on the ground... his arms are so short he ends up at a 45-degree angle). He wasn't doing his typical smiling last night. You could tell he was concentrating hard. I'm so proud of him!

Sorry the video is so dark. My laptop is in the repair yard (aka my brother's house) and we don't have video editing software on the spare computer.

Happy birthday, sweet Micah

The day has come... Micah turned one year old today. It's a bittersweet day. It's a blessing that he's even alive given everything that has gone on with him this year, especially that he almost didn't come out of the OR following his open-heart surgery because they had a hard time getting him off the bypass machine (he went back on bypass twice). But it's also a sad day for me because it's a major life marker, so what he is not doing becomes very evident (i.e. not eating anything by mouth and not sitting independently).

I'll post more photos later. We're having some computer issues and I don't want to be online very long.

Mark's accident

Nathan: "Take that thing off of you."
Mark: "Why?"
Nathan: "Cuz I don't like it."

Maybe you're wondering about what Nathan is speaking. That would be Mark's sling that he's wearing due to a skiing accident the weekend before Christmas. Yes, I received a call from Mark at the Breckenridge Medical Center mere hours after he started skiing. I didn't believe him at first. It was lunchtime and I thought he was just taking a break. I'm pretty sure one of the last things I said before he left for vacation was, "Just don't get hurt. That's the last thing we need right now."

He dislocated his shoulder and fractured his humerus after running into a snowboarder (who is fine, by the way). He saw his orthopedic surgeon last week who wanted to see him again today. Today he was concerned about something about a tendon and ordered an MRI. Great. What are the chances he can get in for that tomorrow before the new calendar year? Not so great. His appt with the doc wasn't until 5:00, so he can't talk to the scheduler until tomorrow morning, the last day of the calendar year. Why does that matter? Because we've met our family out-of-pocket maximum for our insurance this calendar year. So anything else that we get hit with in 2008 is covered at 100%. So if Mark's MRI is on Friday, we'll pay a ton of money for it. What a great way to start a new year!

Please pray that he's able to get in for an MRI tomorrow. Highly unlikely, I know, but it would really help.

The Christmas letter

The elves came through and the Christmas letter is finally written. See the link on the upper left side of the blog to read it.

I hope you all had a wonderful Christmas. Micah had a great time playing with the wrapping paper. Nathan is still having a fun time "showing Micah all of his toys" (aka, playing with Micah's toys).

We're home

Micah had his first outpatient surgical experience today. It was quite a nice change. He definitely knew where he was after we put the hospital "gown" on him and he was no longer his easy-going self: he quickly became quite irritable. And he didn't come out of anesthesia well either (it was tough to settle him down). He finally settled after we put him in his car seat and strolled him around the unit with his IV still in. Yes, the car seat. I would not have thought a car seat could be a happy place for a baby after dealing with Nathan's aversion to that location as a baby. But Micah just loves it.

One of the challenges of having a baby who is fed through a tube is that he can't communicate that he doesn't want more food until it's sort of too late. He doesn't decide how much food goes into his intestines: we decide for him. So after a few hours of food going into him after surgery, he got puky on the ride home. When I vented his stomach, there was bile there. That is the only way we know that a specific volume of food is too much for him. If he ate from a bottle like other babies, he probably wouldn't have over-eaten.

Anyway.... we're home. Please pray that Micah heals quickly (he's pretty bruised "down there"). And that he would be able to get up to volume on feeds in the next day or so.

OR visit #6

Micah is having his "little boy" surgery today for undescended testicles. "Why 3 days before Christmas?" you might ask. Well, with the next baby coming on 2/2 or 2/3, I didn't want to take the trip to Milwaukee in late January (our other option). So here we are.
Let's make this the last OR visit for a while, okay buddy?

If you're looking for our Christmas update letter, let us know when you find it. We're hoping the Christmas elves will write it for us. Seriously, though, it's in process and we'll post it soon. Meanwhile, I'll try to do some updates on our lives for the last six weeks.

One major update is that Micah is sleeping much better these days (until the past 3 days that he's been sort of congested). Thank you to everyone who has been praying for our rest. Micah started sleeping better just in time for me to be less comfortable in my 3rd trimester state... but at least he is sleeping better and he's a much happier baby because of it (not that he was ever really a grumpy baby).

Please pray for Becky, Micah's occupational therapist. She is being deployed to Baghdad (though that could easily turn into Afghanistan, from what I hear). We will miss her dearly. Pray we would have wisdom about how to handle Micah's therapy needs going forward. We could wait for the county to hire a temporary OT, or we could go with private services.

I can't post pictures from the hospital, but I'll post some new ones soon.

First Haircut

Before:

In process:

After:

I didn't do an all-over cut... I just cut enough to get it out of his eyes. It's going to reduce his comb-over too, so it will likely stick up more on the top of his head where he has opposing cowlicks. Too cute!

Today's Nathan quote:

"Daddeeeeee... you broke my circle. That was not kind. You need to say you're sorry to me."

New Nathanisms

Looking out his window when Nathan woke up Saturday morning: "Look! It's snowing! It must be Christmastime!"

Eating pizza (and salad) for dinner tonight: "Why is Daddy taking all the pieces?"

On a separate note, Micah is not sleeping well. Sometimes it's just general fussiness. Sometimes there's air/gas in his stomach that needs to be vented. But other times he's quite uncomfortable and it appears to be lower GI-related. In any case, we're all pretty exhausted around here and could use your prayers.

This is a photo of Micah the day before he went into the hospital at the end of September (this was taken a few hours after Nathan's birthday party). Micah NEVER sleeps on his tummy, but this was the only way he would sleep that day, and we had to pat his back to get him to fall asleep. He was really sick.

Quite a difference from this photo, huh? He's doing a great job sitting up in his Bumbo seat for extended periods of time.

Here's the whole family on Sunday after Micah's baby dedication at church

Lion cub

I'm a little biased, but isn't Micah the cutest, brave lion cub you've ever seen? I couldn't decide which picture to post, so you get three.

If you're wondering why there are no photos of Nathan in his costume, well, that's because he refused to wear it. He spent Friday afternoon being completely ornery. He was a grump at the neighbor's party (which was soooo fun... they even had an inflatable bouncy thing) and he wouldn't don his costume to go trick or treating. He was a true joy. I guess we all have our moments, but his are coming way too frequently these days. :-(

Nathan's reaction

We talked to Nathan over the weekend about him getting another sibling.

Mommy: "Nathan, do you know we're getting another baby?"
Nathan: "A baby sister!?"
Mommy: "No, buddy, a baby brother."
Nathan: "I don't want another brother."

In Nathan's defense, Micah has required more than any baby's fair share of time and sacrifice. Nathan has had to make lots of sacrifices this year. His brother has spent 3 months in the hospital. We were stuck at home before Micah's heart surgery and couldn't go anywhere around other people (and it was too cold to go to the park).

It's difficult for a 3-year-old to understand that not all baby brothers take Mommy and Daddy away from home, etc. So I guess the proof will be in the pudding for him.

By the way... as soon as the schedule at my OB's office comes out, we'll be scheduling the c-section for the first week of February.

Sickness spreads

Yes, it's true. I'm sick too. I really hope to feel better tomorrow. Mark has been an all-star this weekend, taking care of the boys.

It's sad... it's almost the end of October and I haven't shared much about Down syndrome for awareness month. I'll just have to spread it into November. But if any of you readers out there have specific questions, please let me know. I'll be happy to answer them.

For a bit of humor, I'll add a Nathanism. We've never given Nathan straight juice, other than an occasional juice box at a party. He usually gets about 2/3 water and 1/3 juice (if you're worried he's not getting enough Vitamin C, then you don't understand exactly HOW MUCH this child drinks every day). Anyway... Nathan has recently been saying he would like "the juice up and the water down." It's quite cute and very insightful, actually.

Oh, and another one. Two weeks ago we took a family "hiking" trip to a state park to see the beautiful leaves. We talked about the pretty park all morning. After we walked for a bit, we drove around the rest of the park. After a while, Nathan starting asking, "Where's the park?" We replied, "We're IN the park, buddy." "But where IS it?" "Right here." "Where IS it?" It was a very long, hilarious conversation. Nathan's definition of "park" is apparently more like "playground." He truly didn't understand that we could DRIVE through a park. He was thinking swings and slides.

Weary

Micah still isn't sleeping well. He cries every hour or so after about midnight. It's heartbreaking. And tiring.

"Come to me, all you who are weary and burdened, and I will give you rest. Take my yolk upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls." (Matthew 11:28-29)

Please pray for rest for us. Mark actually came home from work this morning because he has a nasty cold.

More photos

For those of you who knew us when Nathan was an infant, you might recall that he screamed every time he was placed in his car seat. Micah, on the other hand, LOVES his car seat. You can almost see the excitement in words: "Yay! Where are we going?"

Nathan and neighbor Nathan played dress up one night while we had dinner at their house. The boys were so funny!

Mark ran his first 1/2 marathon in September and did it in under 2 hours. And he hardly looks tired!

How cute are these matching thermals?

Photos

Sickness in our house is spreading... please pray that Micah escapes with no more than his current sneezing and slightly runny nose.


In light of my need to get to bed at a reasonable time tonight, I'm going to just post some photos that should have gone up in September but I've been a bit disorganized.

Micah's first experience in the water

Okay, he liked it better before the water hit his tummy.
Post-swim (his legs aren't quite as chunky now, but they were pretty yummy back then)

Nathan "driving my car and calling Grammie"
Micah in the tub, showing off the war wounds. Obviously, the open-heart surgery scar is the most prominent. He still has some small scars from the chest tubes, but those will be invisible soon, I'm sure. I'm pretty impressed with the scar from his duodenal atresia surgery. It's four inches long, to his right of his belly button (way bottom of the photo), and it's hardly noticeable. Same thing with the one-inch vertical scar to his right of his feeding tube from when they placed the tube. The white thing on his lower left abdomen is his feeding tube. I'll take a photo of that sometime by itself.