O2 Be Free

So big good news today. Clara no longer needs to be on oxygen!!! Last week we had a sleep study done and we received the results today. Clara averaged 93% on her oxygen saturation and only dipped to 88% or below 0.7% of the time. These numbers matched my expectations since I checked in on Clara frequently during the sleep study. I was a bit surprised that averaging only 93% was sufficient to take Clara off oxygen since it is on the low side of the targeted 92% to 97% range. Kristina was the one who talked to the Doc and he expressed that her overall numbers were actually quite good. So hooray!

Even though Clara had progressed to just needing oxygen at night and during naps this is still just a huge step for me. It’s ingrained in me that these girls are fragile, but I can’t express how good it feels to remove this reminder of how much we have endured. Admittedly, when Clara first came home on oxygen it was almost a badge of courage that the oxygen followed us around. Kristina and I had been through a lot and I would have traded Clara coming home oxygen free for the world. But that would have seemed a bit unfair. If Clara had come home oxygen free it would have felt odd that a passer by, or a visitor to our home, could look at our twins and have no notion that it hasn’t been easy for us. However, time has worn on and I think of Kristina’s hospitalization and the NICU struggles as distant memories and so it seems only natural now that Clara is off oxygen. At this point it would seem unfair to have that badge of courage, because the girls are happy and growing and progressing. With Clara’s cannula stickers removed from her head we now look and can start to feel like a normal family. Oh boy does that feel good.

Wiilly Niit

Old habits die hard…like not updating my blog very frequently.

I probably should write about the uneventful well baby doctor’s visit that the twins had today (huge sigh of relief), but my wife, the blog subject thief, already has it covered. Instead, I will talk about much more worldly matters.

It’s not quite news anymore but one of my Father’s Day gifts from Kristina came as quite a surprise. After years of Kristina taking a hard line stance against game consoles, she surprised me with a Nintendo Wii. I know my wife trusts me, but she has made rightful claims that her stance was due to her “not wanting to lose her husband.” I guess I should maybe take pause at that notion and wonder if she actually does want to lose her husband, but instead I blindly assumed that she thought I could actually be responsible and not play all day and all night. To prove my responsibility I even waited a couple days until I could clear out an evening to setup the Wii. I did this despite my instinct to set it up right away and let the family fend for themselves for a few days. However, on the evening I did get it installed I “tested” the unit until the, uh, wii hours of the night.

While I’ve certainly played computer games in years past (not sure why I don’t very often these days) the one and only game console I’ve ever owned is an Atari 2600. I sunk plenty of hours into that game console (I used to have the Activision patches to prove it). With that point of reference the Wii is an amazing creation to me. It is a far cry from the days of blowing in the cartridge to get a game to work. When I first opened the box I couldn’t believe how small the console is. Then as I looked at the connections I foolishly thought “how can you fit multiple joysticks into this (I hadn’t yet learned the proper term: Wii Remote - and didn’t think to use the proper generic term: game controller)?” Silly me, there are no wires for the controllers, because they are wireless. Duh. Speaking of wirelessness, it’s also very cool that the Wii comes with the ability to connect wirelessly to the internet. This has allowed me to download Super Mario Bros. for Kristina, which has the nice side effect of enabling my sinister plan for her to become attached to the Wii too.

Anyway, I’m quite happy with the Wii versus the other game consoles. Not only are most game titles a little more kid friendly (I’ll need to start Alex as soon as possible of course), but I really do like the idea of having to get up and move around to play a game. Plus, quite frankly the game controllers found on the Play Station and XBox just confuse and disorient and old man like me. The Wii controllers are quite natural, which is very welcome.

Anyway, I would write more, but clearly I have some important things to do.

183 Days Later

The girls turned 6 months today. In some ways it seems like a long time ago since my mind works hard to forget the stressful days while Kristina was in the hospital and then the girls were in the NICU. Thankfully, the NICU days seem long gone. In other ways time has flown by. Going to work and helping parent 3 kiddos when I'm home does not create much boredom. In that sense, time has zipped by and so it seems the twins cannot possibly have already traveled half way around the sun.

In many respects the girls have come quite far. Never mind the feat of just getting out of the NICU without crazy major complications. Clara has reduced her oxygen needs faster than anticipated. With the help of the physical therapist's weekly visits and Kristina's uber-mom diligence with therapy, the therapist is already seeing good progress as the girls attempt to catch up to their peers. It is also nice to have a therapist around to look for some of the subtle signs of neurological damage (she hasn't noted any) and to observe that the girls are hitting milestones roughly together (they have). At this point the girls are relatively healthy, are gaining weight well, and are mostly happy babies. They are even starting to crack a little bit of a laugh now.

Still, there have been enough scares to stay a bit cynical. Perhaps my memory is poor, but it seems like when Alex hit a milestone, he grasped it fairly quickly. For the girls, milestones seem harder to judge as they develop gradually. And Clara has hit a bit of a wall with her oxygen. We were hoping she would be off oxygen by now, but some experiments removing oxygen from Clara as she tries to sleep have failed (though she is so very close). A little coughing fit doesn't strike fear anymore, but receives a lingering raised eyebrow of worry. I'm grateful for the progress already made and ecstatic to see the girls' little faces light up when they see me in the morning an again when I come home from work (they are happy babies). However, there is still a constant undercurrent of concern.

I'm curious to see what the next 183 days will bring.

The Numbers Are In

So I think after a couple phone calls this week. All of the medical bills associated with the twins have been settled. Sure Evelyn had a somewhat recent trip to the hospital for her MRI, but I actually paid a couple bills this week from the girls stay at the NICU. It has been four months since the girls came home (has it been that long already?) and only now do I think I'm all paid up.

I have to say that while Aetna, our insurance provider, has been very good to so far it pays (literally and figuratively) to procrastinate paying medical bills. I did not really procrastinate on purpose mind you. In fact I was quite organized. The biggest reason for my hesitation to pay bills was due to the girls' NICU stay spanning a calendar year. Since I knew the bills would be astronomical, I also knew that we would have no troubles reaching our yearly out of pocket maximum for 2007 and 2008. Side note: Try to plan your emergent medical care fall within one insurance enrollment cycle.

So when the bills came rolling in, I paid some of the smaller ones, but waited until I had all of the bigger bills in hand before I started to pay them. I figured if the bills were totaling too high I had some chance of rectifying the situation by threatening a provider with non-payment and working with Aetna in the meantime. If I just paid all bills as they came in I imagined it would be a difficult process to try to get a medical provider or Aetna to cut a check back to me for overpayment. Luckily, I never had to threaten anyone. Aetna has been pretty good, though I have had to clear up a some mistakes along the way. For example, my heart went in my throat a bit when a visit to Aetna's website showed that Aetna was denying all claims for Clara's NICU stay and the hospital was allowed to charge me the small sum of about $263,000.00 (not a typo).

The real payoff for my procrastination was for the bill from the Pediatric group that works in the NICU. Granted the NICU doctors have a terribly tough job, but they charge separately from the hospital. In fact they attempted to charge over $800 per day per child (just a bit steep). On most days, for our girls, that amounted to a doctor spending about 10 minutes per child during rounds and taking a quick call from Kristina or me to give a status report. Anyway, after sitting on this bill for about a month I received a recording from their billing department that they would deduct 20% off the bill if I paid within the next 15 days...so I did. Though I wonder how much they would have discounted if I waited longer. Anyway, since the doctors had already been paid tens of thousands of dollars by Aetna, I assume a discount was offered because that would be a lot easier than eventually trying to go into some sort of collections agency to handle this (I wasn't going to let it go that far).

To close, I will give stats on what the medical industry thought all of this ordeal was worth. Granted, these numbers are what the medical providers would charge someone off the street without insurance. Since insurance companies have negotiated rates, I think Aetna allowed the medical providers to charge roughly half of these numbers. I've rounded the numbers to the nearest hundred.
Kristina: $76,100
Clara: $427,200
Evelyn: $472,000 - Not sure how or why her bill is higher than Clara's. Maybe Aetna's website is not quite right.
Total: $975,300 (almost a million!!!)

Thanks to pretty good coverage and out of pocket maximums we've paid only a wee amount of that million (though this hasn't exactly been free).

That's all. Sorry this post was a bit scattered, but I wanted to convey another side of all the medical fun we've had.

Twins Summary

I figured I would start by providing more or less a medical summary since my last update on my Comomotion blog way back on Jan. 31st. This may be quite redundant for some of you. Kristina has blogged about this time in some detail as well (Third Floor Home blog).

You might recall that Evelyn had already come home from the NICU on Jan. 21st and Clara was set to come home on Feb. 1st. Clara in fact did come home on Feb. 1st and at long last we finally had everyone home.

Clara did come home with attachments. She came home on oxygen (on 1/8 of a liter) and a pulse oximeter (for which to measure the amount of oxygen in her blood). Our pediatric pulmonologist diagnosed her with Chronic Lung Disease (sounds awful, but basically means she has underdeveloped lungs) and estimated that she would probably remain on oxygen until the end of summer. This was disappointing news since predictions by the staff at the hospital were around 2-3 months. Clara seemed to be progressing well with the oxygen, but both girls caught a nasty virus towards the end of February. Clara got in such a coughing fit (coughing for about 20 minutes nonstop) that we took her to the ER. She was hospitalized for 4 days, mostly just for monitoring. The virus made her take a step backwards in her oxygen needs and she came home on 1/4 liter of oxygen (maybe even 1/2 liter). Evelyn handled the virus reasonably well, so no visit to the hospital was necessary for her.

The next month and a half was fairly drama free. The girls were cleared of Retinopathy of Prematurity (ROP - a condition which can lead to blindness). And Clara was cleared of any anomalies in her heart. A heart ultrasound was done because, in some cases, high oxygen needs can cause extra muscle to build up on the heart because the heart is working harder (I can't recall why this is bad).

In mid-April we had quite a scare. A routine doctor's appointment revealed that Evelyn's head was growing significantly faster than normal. This can be attributable to a condition called hydrocephalus (basically bleeding in the brain) and such a condition is, shall we say, undesirable. After a head ultrasound and an MRI, which meant on overnight trip to Children's Hospital, Evelyn got the "all clear." Well, practically an "all clear." The largeness of her head is attributable to something called extra axial space and in Evelyn's case it is benign. Meanwhile, as a precaution, Clara received a head ultrasound too and all was well. The ultrasound also showed that her slightly enlarged ventricles in her brain had not increased in size (a very good thing). So we are still hopeful that she has no long term effects due to this. For a more detailed account of this episode please see Kristina's post: Phew!

So now it's mid-late May and no new drama. The girls have started physical therapy already since their strength is not only behind chronologically, but also gestationally (i.e. age adjusted). I'm not real concerned about this since the girls are getting intervention so early. Also, Alex had speech therapy for about a year and caught up well. Finally there is fabulous news to report that Clara now only needs oxygen while she sleeps. We are hopeful that she will be off oxygen completely in about a month.

There you have it. The girls are a lot happier and easier than their big brother, Alex, was at this age. They like to give smiles and I think I've even heard a little laugh starting to bubble up. Due to a size difference at birth and the virus hitting Clara pretty hard, Evelyn is a moose compared to Clara. Because of the size difference I wonder if the casual observer would think they are identical...until looking at their faces. Kristina has quit her job. This was something we were batting around all along, but Clara's oxygen needs and the girls' medical scares made the decision a bit easier. Mom definitely wants to be around for these girls. Alex has done great playing big brother. He is very loving and helpful. Sure, sometimes he is extra demanding of attention, but he has shown no malice towards the girls at all. Alex is now only going to preschool 3 days a week (instead of full time). Finally, I'm doing well too. After taking a couple weeks off of work when Clara came home I've been back at work.

About This Blog

Hello,

Greetings and welcome to my new blog. Since I no longer intend on just providing updates on the world of “momo” twins I’ve decided to create an entirely new blog. Sit back and try to enjoy.

A few words about the origin of my blog title. It is derived from a joke from one of my favorite comedians, Mitch Hedberg (sadly dead now). Feel free to click the audio on the right column of this blog, or read the quote:
"I mumble a lot off stage. I'm a mumbler. If I'm walking with a friend and I say something, he won't here me. He'll say "What?" So I'll say it again, but once again he doesn't hear me. So he says "What!?" But really it's just some insignificant shit that I'm saying. But now I'm yelling, "That tree is far away.""

This title seems quite apropos since I do mumble and really, let’s be honest here, I’m saying some insignificant shit with this blog. You may ask yourself: “So why a blog anyway? Well, this blog is just as much for me as anyone else since it’s a nice way to record my thoughts so I can have a hearty laugh at myself when I’m older (like 10 minutes from now). I feel kind of goofy to put down some of my thoughts to whoever chooses to read, but I guess I won't let that stop me.

For those of you who have come from my Co-momo-tion blog, I will really truly try to update this blog at least twice a week. Since my wife started blogging again (plug alert: Third Floor Home), we will have to compete for family updates. If you want concise, coherent, and well written family updates then I suggest you go there. As mentioned I plan to use this blog to, uh, blog about anything, but I plan on providing family updates as well.

Other Things You Should Know
The counter you see on this blog is just a hit counter. I could hit refresh a million times on my browser and the counter will go up (hmmm that gives me an idea). At any rate I am using Google Analytics to track “real” statistics on this blog. So you handful of readers out there, I know who you are (well, not really).

I try to be reasonably respectful of privacy. However, I will use first names and not just initials. Unless your first name is TheMostUniqueNameInTheWorld I think you can be assured of relative privacy. Plus remember, there’s a good chance you know the other handful of readers of this blog on a first name basis anyway.

I love bulleted lists and parenthesis, so be aware.

I will add more stuff here as I think about it. This post will probably be updated with some regularity…I’ll let you know when it happens.