The latest

The follow up ultrasound was performed on Thursday, but it was later in the afternoon, so results were not available until Friday. Friday morning, I received a call on my cell phone from Dylan's doctor. The latest ultrasound did not show any further swelling of the ventricles, nor did it indicate any need for surgery.

But...

There's always a "but", it seems. This time, the but was that she also reviewed the original MRI with a neurologist and "there is some cause for additional concern" that she wanted to speak with Barbara and I in person about. After a few hours of distress, worry and fear of the coming conference, we finally sat down with his doctor, LPN and a social worker.

Here is the gist of our discussion in a nutshell... Dylan does indeed have enlarged ventricles, but it appears to not be caused by a clot or by a drainage issue. Instead, the white brain matter around the ventricles appears to not be as large as expected. Also, it is not as mature as is expected. These are conditions known as leukomalacia and delayed myelination.

This means that Dylan will possibly experience developmental delays of either or both a motor control nature or cognitive nature. There is no way to predict the nature or extent of the delays, or even if they will definately occur. Another MRI was ordered to get more detailed imagery of the affected areas, ostensibly to better ascertain the extent of the condition.

Although this means that there may be some unexpected challlenges down the road for us, it's not a worst case scenraio, by any means. If Dylan needs some extra time to develop or to learn certain things, he'll be given all the time he needs. If he needs physical therapy, speech therapy, occupational therapy or other help, he'll be sure to get it. If he needs more attention than the typical baby, we've got all the attention and love in the world to give him.

I'll have more later as I digest the information, research the conditions and talk with his doctor some more about it.

4lbs, 1 oz!

This entry's title kind of says it all... Dylan weighed in at 4 lbs, 1 oz tonight! Breaking the 4 lb milestone is a big deal to Barb and I. It's very encouraging to see him growing at such a healthy rate.

His feedings are up to 34 cc each also.

Even better is his overall disposition. Since Friday afternoon, Dylan has been kind of sleepy and tired throughout our entire visits, having somewhat steady problems with his O2 saturation and heart rate, and he has been very susceptible to any kinds of stress- be it from handling, feeding, lights... whatever.

Well, last night and tonight have been a complete reversal of those trends. Last night, I was able to kangaroo with Dylan for over 2 hours, during which he had no desats, no bradychardias and no apneas. He tolerated his feeding well, while on my chest and he was alert and playful through a large portion of my time with him. Tonight, Barbara had the same results in her 1 1/2 hour with him. His eyes were open for the majority of the visit, he was swinging his arms about, making faces and just generally seeming to be very comfortable. Again, he had no desats or bradys or apneas. We're both so happy to be able to hold him again. Although it was only one night where he was so stressed that we could not handle him, it was more than either of us would like to deal with again.

As for the enlarged ventricles and the progress there... well, there is no progress, and that's sort of a good thing. He won't have a repeat ultrasound until Thursday, so the only news we could bring you about it at this point would be if things got worse, and they certainly have not. There was a 1/2 cm difference in his head circumference today, but that can easily be attributed to human error in the measurement (measuring in a different place) growth, or a combination of the two. He may even have a bit of swelling from the hydrocephalus, but he remians asymptomatic, so there really is nothing to be done there. All in all, the whole hydrocephalus thing is status quo, and I'll take that over getting worse, any day.

MRI Results...

We're back from the NICU for a little while to take care of the animals and to have dinner, so I thought I'd update any readers with the MRI results.

It turns out that the structure of the aqueducts seems to be fine and that the enalrgement of the ventricles is indeed caused by a residual clot from an undetected bleed. The bleed must have been very small, the doc says, because it was very difficult to detect the clot.

So... what this means is this: First off, Dylan is in no immediate danger. The doc believes that the clot could actually disolve and we could be lucky enough to have the entire situation resolve itself without any intervention. The plan is to monitor his head circumference and perform repeat ultrasounds twice a week to watch the size of the ventricles themselves. Should it not resolve on it's own, then they will attempt to draw out the clot with a spinal tap. They would also consider a tap if the pressure actually were to increase to the point of causing symptoms.

Secondly, there is the issue of the brain bleed itself. Brain bleeds can come in many shapes and sizes, with varying degrees of severity. This one was apparently not severe at all, so the outlook is good. Severe brain bleeds can lead to neurological impairment, learning disabilities, ADD and other issues. While there is a slight chance of Dylan being affected in this way, the odds are favorable that this will not be the case, given the apparent insignificance of the bleed.

Overall, although we would have liked more of a resolution, it's good news. There is currently no reason to perform any surgery, and the future outlook is also good.

In other news...

Dyaln's weight is up to 1745 g as of last night. That's 3lbs, 14oz! He's growing like a weed!

And that may actually be the cause of the episodes of bradychardia and low O2 saturation from the last few days. Barbara and I were concerned that inter-cranial pressure caused by the enlarged ventricles was causing neurological difficulty, leading to these issues, but the doctor assures us that these are not issues related to hydrocephalus at all. Increased ventricle size like Dylan has would not actually lead to additional pressure on the brain, unless his head had swollen as well, and all available space was already taken. I turns out that Dylan is simply growing faster than his cardio-pulminary systems can keep up with. It's almost like he is doing "too well".

They wouldn't want to do anything to slow his growth, as growing is what he needs to do most. If the O2 sat and the bradychardia issues become worse, they may have to put Dylan on oxygen to help him keep up with things. This may seem like a step back, but if it does come to pass, it simply means that some systems are growing faster than others. We wouldn't be too concerned about that. It will all even out in due time.

Anyway, that's it for now... more later, maybe.