Day 3 started bright and early as we visited with our OB, the pediatric neurologist, the geneticist, and the neo natalogist for morning rounds. They had reviewed the day 1 ultrasounds before gathering with us by the boys’ side. It seems the ultrasounds are confirming what we believed to be true in the pregnancy ultrasounds in terms of the brain formations. In the same breath, they will admit that ultrasound isn’t the preferred way to assess Lissencephaly, so we remain anxious for the MRI. We don’t anticipate that the MRI will shockingly show a healthy perfect brain…but it would be nice to see at least a little sulcation (wrinkles) as opposed to the completely smooth the ultrasounds suggest.
In general, this is not new information, nor is it particularly revealing about the prognosis…I anticipate these “we’ll just have to see” conversations to become a regular part of our life. And see we shall.
Because the thing is…the brain is a powerful tool. And our God is a powerful God, and these boys…are something else. So no text book can reveal how things will go.
I’ll give you this story for the day…feeding issues are known to be a concern for DW children. For our boys in particular, some of the medical staff felt their poor tone, particularly the core area may be a concern. Both for breathing and for feeding. They also looked at their suck and gag reflexes. N’s suck wasn’t great, but was sufficient, and he had a gag reflex. L has the stronger suck, but had no gag reflex. That is concerning with regard to his ability to swallow safely, and avoid aspiration.
But…these boys can’t read text books. And as of this afternoon, L and N are both eating 30 ml (that’s one ounce!) from a bottle at each feeding. In fact, they are both eating so well that they are fairly close to earning their way out of the IVs that are being used for teeny amounts of sugar water. (Before I finished this and hit send, J returned to tell me N’s IV has already been removed.)
That doesn’t mean we’re out of the woods on feeding issues. Those will be one of the many tests and studies we’ll perform once we get to the specialized NICU next week.
But for now, these boys can’t read what they’re not supposed to be able to do. And we’re sure not going to tell them.
Other news for the day:
Still breathing well
Still no signs of hydrocephalus
AND…it was a photo sort of day!