We’ve been pretty busy the last day or two. After the CHOP meetings on Monday, we went back home to Virginia to pack up for a long stay and drove back to NJ. I also wanted to hold off on posting an update until some hopefulness had come back to us. We were pretty down that night and a blog post at that time just wasn’t happening.
The meetings at CHOP were not quite as promising as we’d hoped. Not all bad, but I guess we were hoping that this whole thing would just be some kind of misunderstanding. It wasn’t.
Had another MRI, which took an hour and a half because Ben was feeling pretty active. They eventually settled for the images they had because I had turned pale from being on my back that long. They were able to confirm that the hernia is large, right-sided, and involves the liver, intestines, and gallbladder. That’s nothing new. The LHR (lung-to-head ratio) can sometimes be a predictor of prognosis. Below 1.0 is bad; over 1.4 is better. Ben is 1.2, so he’s right in the middle. Most babies in this range will require ECMO, which is not the greatest news, as right now his weight disqualifies him for it. So we need to pack on some padding, fast. His overall weight is in the 5th percentile, which means if you compare him against 100 other babies, only four will be smaller than him. I said that we only had five weeks – IF we make it to 40 weeks…and the doctor immediately said, “Well, you’re not going to.” We aren’t going past 38 weeks, and he may come sooner than that. So the maximum amount of time we have is 2 weeks and 6 days at this point.
Then we had an ultrasound, which went…okay. His head is measuring a bit ahead and his limbs are measuring a bit behind. His head is in the 90th percentile while his abdomen is in the 10th. That’s a big gap. The worry is that his ears are a bit low set, and in addition to his growth pattern and te CDH, this MAY indicate another issue. It’s possible that the CDH is secondary to a syndrome of some sort. We’re having an amniocentesis this afternoon to rule out chromosomal abnormalities, as some issues may change how things are handled when he’s born. We won’t have the results for about 10 days (?!), and he could very easily make his arrival before then. Hoping that this is negative as Ben does not need anything else working against him and I don’t know how much more bad news we can take. The good part about the ultrasound (Ready for good news? Yeah, us too.) was that we got to see his little face in 3D. Somehow, though, I wasn’t at all surprised when we saw him; I already knew his face.
Here’s a picture…looks a little wavy because he was moving around:
The echocardiogram seems to have gone fine. Nothing was mentioned about it in the meeting (and I forgot to ask), and I don’t think they are in the business of sparing tears – so they would have said something. Still, I’ll ask today when we have the opportunity.
It was helpful to me to write all of this out because it doesn’t seem as bad as it did on Monday, and maybe that’s because we’ve had time to put things into perspective. There were possibilities discussed in the meeting that somehow became facts in our minds, and it terrified us. Those possibilities (specifically, such as Fryns syndrome being the underlying cause of the CDH) are still there, and they’re still scary. But whatever the situation is can’t be changed. We have to be positive…it beats the hell out of the alternative.
Before we left the house in Virginia to come up here, I asked Eddie one more time if he thought we were doing the right thing with this. Just to bring us back to the ground and give us a minute to think it through. He said, “We’re doing the only thing we can do: everything.” And he’s absolutely right.
We’re leaving in a bit for the hospital to tour the NICU (we were supposed to do it on Monday but deferred it to today because we just couldn’t take anymore), the amniocentesis, and first OB appointment at CHOP.
Thanks again to everyone for the amazing support. Not a single e-mail, comment, message, text, or phone call goes unnoticed…even if I don’t manage to get back to everybody right away.