Blog? What Blog?

So in my last post, I said I'd get more pics in a few days. But what I MEANT was a few weeks. Right? Hear me sigh deeply at not having enough time to keep up...

I'll try to get a better post up soon. In the meantime, here's a pic of the boys from earlier tonight, courtesy of Lissy, one of our two amazing nannies.

We Now Return to Your Regularly Scheduled Programming

Sorry for being off the radar for so long, but life (the crazy stuff that happens between blog posts) got a little busy. Not bad...just busy.

Amanda and I will provide further updates on the boys, with pics (and if you're very good, boys and girls, maybe some video).

In the meantime, let me just say that in general, the boys are doing well, gaining weight, and making progress.

John-Raven chillin' in his bouncy.

William, also rockin' the bouncy.

Expect updates and pics within the next few days. Thanks for enduring the hiatus, and we'll make it a point to stay on top of things going forward.

Word,

The CobbQuad

William is Watching You

All Buttoned Up

Sing it with me, folks: M-I-C, K-E-Y, M-O-U B-U-T-T-O-N (the "button" part doesn't flow as well, but it's the only joke I could think of.) The boys now have their g-buttons. (The specific type is the Mic-Key button: www.mic-key.com.)

The surgery was performed by Dr. Herman last Wednesday morning in the OR at Our Children's House at Baylor, and the boys were discharged Friday afternoon (at 5 o'clock, meaning I got to fight Dallas traffic with two post-surgery one-year-olds...who, I must say, were much calmer than I was. Let's just say it's good the boys aren't repeating what they hear yet.)

Here they are post-surgery at Our Children's House. William didn't take long to perk up after coming off the anesthesia and didn't seem to be in any real pain. John-Raven was clearly uncomfortable, so he got some additional medication. (Can you tell by that faraway look in his eyes?)

As of today, the boys' Mic-Key buttons have been in for a week, and the boys have recovered nicely. William is having more trouble with teething issues than with last week's surgery.

Happy Birthday, Boys!

Hard to believe it's been a year.

Home Again, Home Again

The boys are back home, but this time, they have what we've come to call their "mobile feeding station."

So far, they're digging it.

Status Update for 4/25 (with Cuteness)

Both boys are back at Baylor's Our Children's House now. William was transferred over on Friday without incident. It's nice to have them in the same place again.

They're coming completely off oxygen today, and so far, their oxygen saturation is good. They're not really sick anymore, but they're still coughing up some of the last of the junk that's in their lungs.

The plan is to get the boys back home on Tuesday. After that, we'll wait two or three weeks before coming back to get their Mic-Key buttons.

And now, your weekend dose of cuteness.

John-Raven managed to get along even without his brother. He tolerates his therapies fairly well on most days...

But he presents some challenges to his nurses (and his parents) when it comes to equipment. Keeping his nasal cannula in place is difficult when he'd clearly rather chew on it than breathe from it...

William has had a good attitude about the whole ordeal this week. He still has some stuff to get out of his lungs, and a good cough helps with that. So Dad was trying to model for him by demonstrating a good cough. William misinterpreted it as entertainment...

When the time came to sleep, he slept.

Status Update, 4/22

William is still at Children's Medical Center, but he appears to be on the tail end of his illness. As it turns out, he had bronchiolitis (which was the result of a common cold virus) and aspiration pneumonia (which was likely due to the bronchiolitis and/or the cold). He hasn't had fever for a couple of days, and he's barely on any oxygen at all right now. They'll be weaning him off of oxygen today and if all goes as planned, he'll be back at Our Children's House tomorrow.

John-Raven did not have his surgery this week because (surprise!) he's come down with basically the same thing that William has. Thankfully, OCH was prepared for it following William's episode and have been able to stop John-Raven's problems from escalating.

At this point, the G-tube surgeries will be delayed by a few weeks. After the boys respiratory distress this week, any anesthesiologist would be hesitant to put them under until a proper length of time has passed.

So the plan right now is: get William back to OCH, get set up with temporary NG-tubes, go home, and then come back to Dallas in a few weeks for the G-tube surgeries. I'll let you know if the plan changes. (Judging by recent events, I wouldn't be surprised if it does.)

Also, to clarify: I've been referring to a G-tube, but actually, the boys will be getting what's called a Mic-Key button. For those who don't know, the Mic-Key button is simply a small, low profile valve that is placed in the stomach to create a feeding port. When it's time to feed, you connect the feeding tube to the button. When feeding is done, the tube is disconnected. (Sometimes, a G-tube is used for a couple of weeks before transitioning to the button, but our surgeon may actually just put the button in right away. We'll see.)

William Visits Children's Medical Center (But Not by Choice)

On Sunday, in a matter of a few hours, William went from this...

To this...

He's much better now, but he gave us some drama for sure. It began in the afternoon. He had been doing fine except that he'd been really congested from seasonal allergies. When he woke up after a nap, he was working really hard to breathe and his color was bad. We called in the nurse, who called in the doctor, who called in a whole team. His oxygen levels were low, and because of his history of aspiration, the doc didn't want to take any chances and wanted to make sure he was in a facility better equipped to tend to whatever problems might arise. So he was on his way to the ER at Children's Medical Center in Dallas.

William is still at Children's, but they're weaning him off of his oxygen now, and if he does well, he'll be back at Our Children's House at Baylor soon. Of course, this will delay his surgery, but maybe for no more than a couple of weeks. John-Raven's surgery, however, is scheduled for Friday unless they bump it up. More to come when we have updates.

Moving Forward with the G-Tube

After closely evaluating the William and John-Raven, the speech therapists at Our Children's Hospital have officially recommended G-tubes for long-term feeding purposes. They feel there are too many risks involved in trying to give the boys the nutrition they need by mouth at this time. We have decided to go ahead with the procedure, which will likely happen early next week in Dallas at Our Children's Hospital since the boys are already admitted there.

In just the week since they've been at OCH, the boys have already gained weight because of the feeding process in the hospital: We feed them for half an hour, and whatever's left, we gavage through the NG-tube. In fact, they've gained more weight in the week since they were admitted than they have in recent months.

But an NG-tube is temporary (through the nose), whereas a G-tube is long term (directly through the stomach). Seeing their gains in the last week, we know they'll have good growth once the G-tube is in place.

We knew the G-tube was a strong possibility. I think that, more than anything else, we weren't so much bothered by the idea of the boys getting feeding tubes as by needing feeding tubes. Like any parent, we want their development to be in the positive direction, and needing a G-tube felt like a step back.

But we've done what we can. We are confident that eventually, we'll get the boys' feeding back on track and off of the G-tube. Doing so will be a long-term process, of course, and in the meantime, they'll get the nutrition they need safely and efficiently to power their little brains and bodies and to give them more time and energy to play and put that nutrition to use. I imagine we'll soon see the G-tube not as a step backward, but as an important tool to help us move forward.

Lazy Sunday

The boys are fairly settled in at Our Children's House of Baylor, where they've already begun their feeding treatment and other therapies. Because there's no therapy on Sunday, we had time for a short nap...but the boys were more interested in playing than sleeping.

First Haircuts for the Cobb Twins (and a Health Update)

We originally wanted to wait until their first birthday for haircuts, but as you can see in the pic below, John-Raven's hair was already creeping out over the top of his helmet, and this pic was taken a month and a half ago.

"I can brush them myself, Mom." Crazy post-bath hair. So by this weekend, their hair was starting to take on a life of its own, and the recent warmer weather was making them sweat a lot under their helmets. So we decided it was time for a trim.

Thankfully, the boys didn't seem to mind.

John-Raven watched TV while he got his hair did.

Haircuts are serious business for young William.

Or not.

Chiropractor, then haircuts...and we're out.

Mom and the boys pose with the tulips out front.

Sure, our Converse are 27 sizes too large. But we'll grown into them.

He ain't heavy. He's my brudder.

A Note on the DOC Band (a.k.a. "Helmets")

I mentioned something about "helmets" in this post and realized that I've never really provided much information on what that's about. First off, they aren't true helmets. Helmets suggest something designed for protection, and that's not what these do. They're actually cranial orthotic bands intended to correct the boys' plagiocephaly, which is simply a flattening of part of their heads. Between hydrocephalus, torticollis, and the low muscle tone that has kept them from being mobile yet, they have spent too much time in the same positions, causing their heads to be a bit misshapen. It isn't noticeable in most pictures, but it's definitely there. So, we went to Cranial Technologies to get DOC Bands for the boys to mold their heads into a more symmetrical shape. I'll explain more about the process and our decision to go with Cranial another time -- mostly because we know there are other parents out there looking for information, and we found it extremely helpful to hear about other families' experiences. I will say, in a nutshell, that the process is working and we highly recommend the DOC Band and Cranial Technologies.

Health Update: Inpatient Feeding Program

Starting tomorrow (if all goes as planned), we will be entering the inpatient feeding program at Our Children's House of Baylor in Dallas. The purpose of the program is to help the boys with their feeding skills (oral motor and swallowing). The boys have always been fairly passive about their eating, and for that reason, it's always taken a long time for them to take a bottle. When it was only a few ounces, it wasn't too bad. But now, at 6-8 ounces, it takes an hour or more per bottle per kid. Not only is that longer than they should spend feeding (at a certain point, they start to burn more calories than they're taking in), but it's hard to get them the nutrition they need. It also means less time for other much-needed physical therapies and makes for a long day for everyone involved.

This has been going on for a while. Back in February, we decided to have a swallow study done on the boys, and the results indicated that neither is actively sucking/swallowing as he should be, and both are, at times, aspirating some of what's going down their throats. The implications of this can be serious -- lack of nutrition or dehydration from not taking in enough calories and fluids, of course, but if they aspirate enough, they can get pneumonia. Some of the specialists have already stated they're surprised neither of the boys have had a serious case of pneumonia yet.

Long story short, we've been accepted into a program that will provide the boys with intensive feeding therapy to help them develop the skills they need to safely and effectively take their bottles and other baby foods. Because it's inpatient, the boys will be living there for the duration of the program. The program could last a couple of weeks, or as many as four. (Not sure if it could take longer.) Although it won't be an easy few weeks, we're excited that we've been able to get the boys into this program and hope it helps the boys get where they need to be. Please keep them in your thoughts, and I'll try to update the blog as we make progress.

The Cobbs Get a Snow Day

Dallas/Fort Worth area got record snowfall yesterday, which meant a snow day for most. Considering that my car wouldn't get up the incline of our driveway this morning, I figured I might as well take the day off, too.

On the back deck. Several inches of snow.

The boys didn't quite know what to make of it.

Not our snowman, but it's a good one.

If you're in the DFW area, enjoy the snow. I doubt this area will see this again soon, if ever.

Double Vision

Eye surgery went off without a hitch. We have a couple of groggy boys with bloodshot eyes, but all went well as far as we can tell. When they came back from surgery, they were seriously zonked, and stayed that way until...well, they're still that way.

Mom tried to give John-Raven something to eat. Still preferring to sleep, he and his brother wouldn't take anything until early afternoon.

Eventually, we got both of them to wake up and eat a little bit, so we were given the go-ahead to take them home. Recovery shouldn't be too bad - they don't need eye patches (although that could have made for some good pirate jokes...fear the Dread Pirate William! Arrrrrgh!). Once their strabismus is fixed, they'll be seeing more clearly and with any luck, will no longer be seeing double. I can't say the same for their parents, though.

Late Holiday Pics and Upcoming Eye Surgery

Yes, we are woefully behind on blog posts. I'll try to get caught up over the next week and promise to be better in the future. (Also know that Amanda does a good job putting up pics on Facebook, so if you're into that, consider adding her as a friend.)

Last post showed John-Raven after his hernia/hydrocele surgery. Shortly thereafter, his dad (me, of course) had a long overdue shoulder surgery (a story for another time), which was no fun for anyone because it meant I couldn't pick the boys up, cook gourmet French dinners, play Beethoven's Piano Sonata No. 14, write the Great American Novel, or help Jack Bauer protect the country from terrorists. It also meant that Amanda had to do some extra work taking care of the boys.

Better late than never, here are some pics from the holiday season '09.

Mom gets some extra help in the kitchen.

Mom does double duty feeding to compensate for one-armed Daddy.

(No, that Christmas tree isn't actually on fire.)

Storytime!

Gigi's gift created quite a buzz. John-Raven looks on in awe, one bumblebee staring at another.

Our ever helpful goddaughter Reese assists William in learning to roll over.

We had some good holiday fun with family this year, complete with a white Christmas and the rather unexpected discovery that William thinks cousin Joey's whoopie cushion is the funniest thing ever.

As you can see, we had a good Christmas, and welcomed the New Year with open arms and the hope that we won't have to spend quite so much time in hospitals and with doctors and whatnot this year. The boys have at least one surgery ahead of them already - this one for their eyes. They have infantile esotropia, which is a form of strabismus. Their eyes cross as they try to process visual information on opposite sides (left eye tries to see stuff on the right side, right eye tries to see stuff on the left).

Many babies start out with some level of strabismus that resolves as their eyes get stronger, but esotropia doesn't go away on its own. It's neurological in nature but it can be fixed - or at least improved - with surgery (or multiple surgeries, as the case may be). So they're scheduled for back-to-back operations at Cook Children's Hospital bright and early the morning of February 4th (that's tomorrow, as I write this). We'll give you an update when we're done.