We had another appointment today in Columbus. Key items to look at were Nolan’s growth, signs of early labor, and a re-check of the brains.
Despite having BH contractions, I haven’t shown any signs of progression. No dilation or thinning. So that’s good news. But the good news mostly ends there.
I mentioned in a recent post that we discovered both babies DID appear to have part of a vermis, part of a corpus callosum, and signs of a cavum septum. Those things were no less true today, and their lateral ventricle measurements were still in the 13 mm range. No change on the items with which we are most familiar. Dandy Walker…and some unknown outcomes.
The new bad news has to do with the smoothness of their brains. She mentioned that as being a concern last appointment, but also said she wanted to watch for (late) progress at this appointment. And I think we were so distracted by what we felt was remotely good news that we didn’t HEAR the seriousness of what this can mean. Today, there was no progress. And the new term we’re dealing with is lissencephaly.
The outcome for their Dandy Walker diagnosis was wide and impossible to predict. But the addition of this issue is a bad combination. The ceiling of our “high” expectations has dropped significantly, and the floor for our worst case scenarios…has dropped as well.
In short, we still don’t know what these boys will be battling when they arrive, but the prognosis is more grim than we’ve been hoping. And our hope for any shot at a reasonable quality of life has lessened.
Hope in general…feels like it is fleeting.
Speaking of their arrival…it will be soon. Due to the fact Nolan isn’t growing sufficiently, and the gap between he and Landon has grown, we have an increased risk for still birth. With that in mind…she doesn’t want to wait any longer than we need to, so 32 weeks is our new max. I will return on August 28th for an appointment, and I’ll be admitted. Based on how that day goes, we will determine if we need to move quickly (deliver by 29th or 30th) or if we can wait until as late as Sept 4th.
Either way, the next time we head that direction, I won’t return home until I have held these boys in my arms. And until they arrive and we can make some assessments…I won’t know how long we will be there in the NICU, or if they will ever get to see their nursery.
The mixed emotions about knowing they will finally be here cannot possibly be put into words. While we can’t wait to hold them, and try to get moving on whatever help can be offered…the mommy in me is afraid saying hello may also be the start of saying goodbye. And even though it isn’t true…I feel like while they are with me, they are a little bit protected from what is to come.
Our request for prayer has never been more desperate. And we hope your response to that request has never been more diligent.
I warned you earlier this wasn’t my story, and I didn’t know where it was headed. Unfortunately, it seems today’s chapter is about heartache. But we still thank you for reading it along with us.