Some Good News, but Mostly Bad

We have experienced the next big dip on the NICU roller coaster ride. I'll start with the good news that God is certainly answering prayers about Weston's feedings: he is tolerating them very well, and starting at noon today they are doubling the frequency of his feedings from once every eight hours to once every four hours. We had a really nice visit today: his vitals were very stable, and I got to help with his rounds, as usual, and touch him for a whole hour. He looked so cute and cozy.

Dr. M, Weston's neonatologist, came in and said he wanted to talk to me, but he had another meeting scheduled first. He took too long, so we had to leave before he finished his meeting. However, S, his nurse, usually lets me know results of any tests that have been done, and he didn't mention the head ultrasound that was done yesterday. I realized it about halfway through the visit and wondered if something was wrong. I really didn't want to ask S at that point and risk him hemming and hawing with his answer, so I just kept quiet. Dr. M called when I got home.

So, the bad news is that Weston has a brain bleed. Brain bleeds occur in more than half of babies born at his gestational age and rank in severity from Grade 1 to Grade 4. They usually occur within the first two weeks of life, and Weston is 11 days old. Weston's bleed is a Grade 2 and is on the right side of his brain. Grade 3 and Grade 4 brain bleeds can result in cerebral palsy and various developmental problems. According to what I have heard, Grade 1 and 2 brain bleeds usually resolve on their own, so that's the good news. However, they usually take a very long time to resolve, so we wouldn't necessarily see any change on his repeat ultrasound that is scheduled for next Tuesday.

The additional bad news is that Weston also has some hydrocephalus, also known as water on the brain. Dr. M explained it pretty well, but it is still pretty complicated, so I have a good definition from my book The Preemie Parents' Companion, which is on a recommended reading list provided by the March of Dimes:

               Hydrocephalus..is one of the most serious complications of a severe brain bleed
               (thanks for that). [It] occurs when the bleeding causes a blockage in the circulation
               of cerebrospinal fluid (CSF) in the ventricles...As fluid accumulates, the ventricles
               swell and press on surrounding brain tissue. Hydrocephalus generally occurs slowly,
               and can often be controlled with medication or a series of spinal taps which draw off
               the excess fluid...

The explanation gets progressively worse and details much more invasive treatment and graver outcomes, but I'm trying not to go there at this point. If hydrocephalus gets bad enough, it can cause permanent brain damage. One confusing thing is that the book says that hydrocephalus is associated with more severe brain bleeds, which Weston's is not. Typically, I don't like to go outside of the medical team for information, but this book is very informative, so I'm comfortable reading about these conditions in it.

According to Dr. M, Weston's right tube (ventricle?) is slightly bigger than his left, which is a consequence of the hydrocephalus.

Another conflicting bit of information is that Dr. M described three possible outcomes, which are equal possibilities with Weston: first, the brain bleed is one-third likely to just go away on its own. Second, it could progress to a more serious Grade 3 brain bleed. Finally, the ventricles could continue to grow, which I think means that the hydrocephalus would get worse. I have also read a lot about brain bleeds and/or talked to people whose children have experienced them, and, from what I hear, they usually resolve on their own without complication (at least with Grades 1 and 2). It's been my experience that physicians tend to give the worst-case scenarios, so I'm hoping that's the case here too.

With brain bleeds, we just watch and wait. This will not change Weston's day-to-day care, except they are going to add daily measurements of head circumference, presumably to measure if the water on the brain is increasing too much. The good news, I guess, is that the hydrocephalus is not bad enough to require any intervention at this point.

They will repeat a head ultrasound next week. The best-case scenario, medically, is no change, because brain bleeds take so long to resolve. Our favorite nurse, S, is not working again until Monday, so we won't be able to get his take on this for a while, unless we go back before his shift ends tonight at 7:00.

This constant roller coaster ride sucks more than anything. Sorry I can't be more eloquent than that right now. So the prayer request changes yet again: we are thankful for tolerated feedings and current stability with everything else. Please pray that Weston's brain bleed and hydrocephalus will resolve without incident.