Catching Up

Prior to the boys' VP shunt surgeries, William was up to taking a bottle or nursing every other feeding, and John-Raven was taking a bottle or nursing a few times daily. After the surgeries, they took a few steps back. William was on IV and John-Raven was just tube feeding. Since then, they've slowly been catching up to their former selves.

Now they're bottle feeding and breastfeeding most of the time. The oxygen monitors were removed because their levels have been stable. Once the feeding tube is removed altogether, the boys will be close to coming home.

I also need to do some catching up. Since I've fallen behind on my posting, here are several pics.

Below and Above: Phone pics of Mom giving William a bath last week. The arms look blurry because he was wiggling them around in excitement. (Or terror?) I've since bathed him and John-Raven, and both tolerate the process fairly well (to an extent).

Below: I placed my hand in this pic from last week to give some perspective on William's size.

And below, a few pre-surgery pics. These are from a digital camera that we left in the NICU so the nurses could take pics while we were away. I think they had fun. (The nurses and the boys.)

Don't they look like a couple of little old men?

-"Say, bubba, whachoobeenupto?"
-"Eatin'. Poopin'. Sleepin'. A li'l screaming."
-"Say...'em nurses sure are cute."
-"Yep."

Can you tell which is which?

Above: I think they know each other's feet more than their faces. That's what was in front of them for several months.

They're gaining weight and eating more. It's only a matter of time before they're adding their cries to the chorus of screaming infants around Briarwood.

Feeding Time

A couple of pics below - Mom with William, Dad with John-Raven. Notice how they're checking out the camera.

Hard to deny the cuteness, isn't it? We're a bit biased, though.

(Pics by Anh Pham. Thanks Anh!)

New Digs

The boys are moving up in the world. After proving that they could keep their temperatures stable, William and John-Raven have been moved from incubators to cribs. To me, their "cribs" are more like clear plastic tubs, or at least they seem that way after the incubators. I doubt these units will show up on MTV any time soon, but you won't hear us complain. The change means that they're improving, which makes them one step closer to coming home (whenever that will be). They're also eating much better, they're more alert, and their oxygen levels are steadier.

Mom with John-Raven. Cribs seem so small compared to incubators.

Close-up of Mom and John-Raven.

William, not looking thrilled at having his picture taken. (Sorry it's sideways. Not sure how to flip pictures in Blogger, and I'm too lazy to figure it out right now.)

If I haven't made the point clearly enough before, let me say we've had some fabulous, caring professionals looking after William and John-Raven. Virtually all of the doctors, nurses, and techs we've dealt with at the Harris NICU and at Cook Children's have been kind and helpful beyond words, and the progress the boys are making is a testament to the dedication of those looking out for them right now.

Day After Surgery Pics

I took these this morning. The swelling of the skin around the shunt tubing that runs from their heads to their tummies has gone down so that it is already much less noticeable. The incisions, which really aren't that large to begin with (though I imagine the boys would argue that point), are visible in person but more difficult to see in these pics. John-Raven's head incision is toward the back, but William is lying with his head turned so that his head incision isn't visible. The little pink line near their bellybuttons was the only other incision required.

John-Raven (5/15/09)

William (5/15/09)

They were spitting up so much overnight that they weren't allowed to eat and had to be put on IVs. We think they'll be able to start eating again today.

Glass Ceilings

The surgery waiting room at Cook Children's Hospital is nice - the ceiling is glass, letting the sun shine through onto those waiting below. The glass ceiling design, I assume, is to help keep people from feeling depressed and gloomy while doctors on the other side of the walls cut on their kids. I suppose it helps. Glass ceilings are great, but as long as you know they're there, you know there's something looming over you.

Doctors Honeycutt and Donahue both operated - one on each of the boys - so that the surgeries could begin and end at close to the same time. They finished around 2pm (if I remember correctly) and said the surgeries went very well.

We saw the boys afterward. All things considered, they looked well. As well as you can look when you're two weeks old and have newly sewn-up incisions in your head and abdomen, a hunk of plastic in your head, and tubing running from your brain to your abdomen. It's not easy seeing the bulges from the shunts and the raised-skin path of tubing running down their little bodies, but we're focusing on how this helps the boys in the long run. John-Raven especially had become noticeably more lethargic over the last few days - a sign that the pressure from the hydrocephalus was finally becoming too much for him.

We'll have to monitor the shunts and the hydrocephalus for the rest of the boys' lives to make sure the shunts work properly and don't get infected. Shunts are notorious about needing revision, but we're hoping that we won't have too many problems so that we can spend more time examining the effects of the holoprosencephaly - the other condition that may impact the boys' development. The HPE could manifest in any number of ways and in different degrees, and although we don't want to set limits where there may be none, we wonder where the next challenges will be. I have to admit, as I looked up a the glass ceiling while waiting for the surgery to be over, I found myself worrying about the boys' own glass ceilings. Will there be physical challenges? Mental challenges? A combination? How will they react to the obstacles they're faced with? How will we react as parents? At this point, there's no telling, but we've seen good signs from the boys so far. And there's one thing I keep reminding myself about glass ceilings. Glass breaks.

Surgery - No Longer Delayed

The time has finally come -- the boys are to have their shunt surgery tomorrow, Thursday, May 14. The scheduled times are 1 and 2 o'clock PM, but times often change.

To be honest, Amanda and I weren't prepared for how hard this would hit us. We knew the surgery would happen eventually, but for those few days that it was delayed, the prospect of an operation became this academic thing floating out in the void, something without form or weight. The anticipation has been difficult, certainly, but we would gladly have endured that anticipation for the rest of our lives in exchange for only having to hear, "We don't need to do the surgery yet. We'll wait a little longer."

But the time has come. Knowing that the boys are having surgery is difficult, but what's more difficult is that they need surgery...that their challenges extend beyond getting through this procedure. Hydrocephalus alone can be a challenge -- it's a lifelong condition for most who have it, and the shunts will be necessary for the rest of their lives. The shunts will also prevent the boys from engaging in certain activities. Full contact sports, for example, won't be an option.

But the hydro is only part of the challenge. The doctors have diagnosed the boys with semilobar holoprosencephaly (or, HPE). Never heard of it? Neither had we. And even after talking to the doctors and doing some research online, we still don't know much about what to expect. Semilobar HPE has the widest range of results of all forms of HPE, so the boys could be looking at effects ranging from mild to severe. We're encouraged by the boys' condition up until now (good muscle tone, good functional development, regulating heart rate and respiration, etc.), and because they have been developing well so far, we're hopeful that their development will continue positively. It could be years before we know what we're facing. As the doctors have said to us, "Time will tell."

We know the boys are in good hands. They have great doctors and nurses, and they'll be at high quality facilities. Nonetheless, please keep us in mind tomorrow.

The Cobb Quad Takes a Field Trip

We spent a good chunk of the weekend with the boys, of course, but we slept a bit later on Saturday and Sunday mornings to catch up on some of the rest we miss during the week.

The boys are doing well - gaining weight, nursing/bottle feeding some, and looking better all the time. In fact, they're doing so well that the day nurse let us take them down the hall to a private room so Amanda could nurse William while I held John-Raven. It was the first time the four of us have been together as a family without a nurse or any sort of monitoring equipment. At one point during our little excursion, I held both boys in my arms at the same time. I think they were more relaxed about the experience than I was.

Advanced Hospital Math

I forgot to mention that on the day we left, the twins were moved into the same room. Prior to that, tracking them was like an algebra problem: William (W) began in 4a with John-Raven (J) in 4b. W remained constant in 4a while his brother moved one room down the hall (J=3b). But then their positions were reversed and J became constant in 3b while W accelerated in the direction of 5. Assuming both twins being equal, how long would it take before they arrive at the same destination?

About 4 days, apparently, thanks to some shuffling around (and some inside help...thanks Stephanie!). Now they're in adjacent incubators. We just wish the hospital would allow co-bedding for twins (and in-house math tutoring for parents).


John-Raven (featured above) is off oxygen now and looking much better. Since the beginning, William has seemed the healthier of the two, but his brother has practically caught up to him. I guess John-Raven wasn't fond of the idea of letting his brother get too far ahead. Maybe that's what he was telling me when he christened my arm this morning as I tried to change his diaper. Or maybe he's telling me I move too slowly. Either way, I hear you, little man...message received.

Both boys are still on feeding tubes, but they're also taking bottles and nursing, to some degree. Being able to feed without tubes is one of the (somewhat obvious) goals they need to reach before they can go home. We don't know when they'll be homebound or whether it's even a good idea for them to come home prior to the shunt surgery (the date for which still isn't set), but we're excited that they are becoming less dependent on NICU support.

With no surgery date set, and with the boys looking so good, we're almost afraid to wonder just how good this could get. If no one had told us our babies had something wrong with them, we wouldn't know they were anything but typical premies. Perhaps better than typical, considering that they seem to be bigger than expected for twins delivered at 34 weeks. On top of that, the occupational therapist (who checks out all of the babies in the Harris Methodist NICU) said yesterday morning that both boys are looking good and responding well to tests.

With no idea of when the boys will have surgery, we're still in a holding pattern for now. Regardless of when the surgery happens, our boys have been given extra time we didn't think they'd have for getting healthier and stronger. We'll take it.

Surgery Delayed

On Tuesday, we met with Dr. Honeycut (the neurosurgeon) and Dr. Barber (the boys' primary doctor in the NICU) only minutes after the two docs had received the results of Monday's MRI. I'll offer details later, but for now, suffice it to say that the surgery has been delayed yet again. Dr. Honeycut doesn't feel any sense of urgency to do the shunt operation. He says that their heads aren't large enough and aren't swelling rapidly enough to put them in any immediate danger and would rather give them as much time as possible to get stronger and more stable. In the meantime, they'll keep a close eye on the boys to make sure nothing takes a sudden turn for the worse.

We'll provide more details soon. And now, a couple of pics...

This was John-Raven on day 2 just prior to a mutual first for us both. It was his first poopy diaper to make and my first one to change. I thanked him for not peeing on me and he thanked me for not leaving his boy parts exposed to the cold air for any longer than necessary.



This was William on day 3 opening his eyes a tad. I actually saw John-Raven open his eyes first, but apparently William was the first to get his baby blues caught on camera.

Almost 4 Days Old, and Counting

First of all, we want to thank everyone so much for the various forms of support we've received so far. Your concern and help mean so much to us, even though we're often too distracted these days to show it. And sorry for the delay in updates - we can't quite pick up a wifi signal in the room so I'm making this blog entry via smartphone. We're also staying busy with trips to the NICU, visits from nurses and doctors and friends/relatives, trying to get some good mommy food going for the boys, and getting an hour or two of sleep here and there.

All things considered, the boys are doing well. They have some of the usual premie challenges, but nothing to really worry about (aside from the hydrocephalus, of course). Most of the nurses here at Harris Methodist have been great, which obviously helps.

The boys had head sonograms on Friday after delivery and MRIs Monday afternoon. The sonos showed the ventricles are significantly dilated (which we already knew), but their heads aren't extremely swollen nor are they swelling rapidly, so Dr. Honeycutt (the neurosurgeon) felt it better to give them a couple of extra days to stabalize before doing the shunt surgery.

It's a good sign that the doc didn't feel compelled to rush the operation. But it's too bad that Amanda will be released from the hospital by then (today, in fact) - being here has made seeing the boys more convenient than it will be once she's back home (not that our trips down from her hospital room to the NICU have been quick and easy...I never knew 3 minutes was such a long time until I had to spend it just washing my hands). We should know the results of the MRIs today, though I won't be surprised if they provide as many questions as answers.

Amanda's getting released today, so we're making the most of our time here. I have some good pics and promise to get them posted (somewhere) as soon as I can.

It's Official: Babies R Us

William Plummer Cobb and John-Raven Lee Cobb were born about 10:45 this morning weighing 4.4 and 4.5 pounds respectively. They're in NICU but doing well. Good apgar scores and no IV needed.