Not even an MRI and an eye exam can keep him down for long…
In other news, the fungal infection is still around… So in the search for the source they took a new urine culture today (this time directly from his bladder using a very fine needle). They are also performing a spinal tap to be able to run a culture on his spinal fluid in case the infection is hiding there.
Also some of you noticed that some pictures of Benjamin he doesn’t have his CPAP gear on. That’s because sometimes when we hold him they test him off of the assistance to see how well he does. So far he has been off for stretches as long as 45 minutes and has done very well. You may also notice that he doesn’t have a feeding tube in his mouth. That is because they moved it to his nose. This sets the stage for trying out a bottle in the very near future.
So I’ve been stalling posting an update because while the doctors gave us a lot of information about Benjamin’s MRI, we don’t feel necessarily wiser for it. Plus, it’s never easy to talk about unhappy stuff.
The short version: There was some bleeding in his brain, in two locations. The bleeds have stopped. They were in the tissue, so are considered damage. While it increases his risk for disabilities down the line, no one knows what exactly this will mean for Ben.
The long version: What we are looking at are two inter-cerebral hemorrhages (ICH). One sort of big one (to us- the doctors called it medium) in his left occipital lobe and one in his cerebellum. No one is sure how they happened. They are pretty atypical in location and due to his age and probably happened around two weeks ago. So far they have not affected Ben outwardly – his reflexes look good, he reacts normally, he isn’t acting any differently. The damage in the cerebellum is more concerning to the doctors due to statistically outcomes for babies with bleeds there, and the more central role it plays in motor skills and balance. The occipital lobe is key in processing vision. We just won’t know what sort of effect this will have on him until he is further along in his development – like when he tries to learn to crawl, walk, speak, read. The range of possibilities is pretty wide, everywhere from no effect to serious disabilities. Luckily babies brains are pretty amazing and undamaged parts sometimes take over functions for damaged parts and recover in ways doctors don’t even understand. Ben will be getting all the same early intervention and therapies he would be getting anyway due to his early birth – so no change there.
And really – this is not a big change for us either. We knew since January Ben would possibly face serious challenges. The risk is a bit higher now, but we will remain hopeful as always. Like I keep saying – the doctors said Ben would probably not make it to viability, then doctors said Ben might not make it past the first few days – heck, five years ago the doctors told us Amy had a 50% chance herself… We’ll just keep proving them wrong. (Well – actually Amy and Ben will – I just hang around and try to get some of the glory).
For us – Benjamin is perfect and we will love him no matter what.
The doctors decided they wanted a better look at the spot in Benjamin’s brain, so they are doing an MRI today.
Poor little guy is off food since last night and had to get intubated and back on the ventilator so they can sedate him and keep him still for the test. sounds like they can extubate him again right after and put him back on CPAP. They will put him back on food a little more slowly.
As I wrote this got news that he is back from his test and warming up.
We probably won’t hear results until tomorrow, but here’s to hoping it’s nothing
This weekend we had several different doctors tell us the same thing: “I don’t know.” Our little Benjamin seems to have become a medical mystery in a couple of ways that have us worried.
1. The “fungus that has not gone away” turns out to be sensitive to the medicine they were giving him to treat it. They changed the medicine to something else that should also kill it, but the question remains – why didn’t the first medicine work? The doctors think it might be hiding someplace – like an abscess – but haven’t seen anything that could be it. They are going to do another culture to see if he still has the infection and if so they need to begin a serious hunt.
2. In the more-worrisome department, on Friday Benjamin had a head ultrasound and they saw a spot in his brain. It was in a place they normally don’t see bleeds and he is also older than preemies who develop bleeds. They aren’t sure what it is, what it means or if it will affect Ben. They will be doing a follow-up scan soon and getting input from other doctors.
On the plus side – he is still doing excellent otherwise. None of this seems to be affecting his outward health. And even better he is now 3 lbs, 1 oz (1390 gm)!
More news as we get it.
So in the end the blood cultures came back clear and Benjamin has gone back to full feeds (still half milk, half formula). Though there is still the matter of an infection in his urinary tract. The fungus that they have been treating him for during the last few weeks is still around. This concerned the doctors a bit since they have been using pretty big anti-fungal guns- the thought is the fungus built up a resistance. So they switched up the meds and hoping the new stuff works. On the plus side, he is not showing any signs of being infected – he is still doing great on room oxygen, tolerating his feeds and being alert and cute.
Yesterday he got a follow-up eye exam and his eyes are still doing well (No ROP – Retinopathy of Prematurity). They are going to do another test in two weeks.
The nurses have suggested we do kangaroo care every time we come in now that he is stable and I got to do it the other day for the first time. I have to say it was pretty amazing to feel him squirming right up against me. Then he slept and I told him about the rules of baseball.
They even tried taking Benjamin off the CPAP for short periods and he has done pretty good. Hopefully soon they will begin officially weaning him.
In other news he is up to 1.3 kg or 2 lbs, 14 oz. Almost 3 pounds!