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.