The home health nursing program has been to the house for registration with the boys. They are going to help us monitor weight gain and check their lungs and vitals. Friday’s nurse registered N. Sunday’s nurse came to register L since he arrived home a couple of days after N. The questions were many and familiar.
Maybe because N is on Oxygen and L is not. Maybe because she didn’t know what Lissencephaly meant. Maybe because they just look so darn great…
If L’s appointments were well baby or sick baby visits.
He looked like a perfectly healthy 1 week old.
It was refreshing to have someone in the medical field to look at the boys and see them as perfect. Everyone else has been very familiar with the Lissencephaly prognosis. They’ve seen this before and it didn’t end well. They look at our boys and don’t just see what they are, but rather seem to fear where they are headed.
But to her, they were just sweet, well (looking) babies. Am I suggesting to you that they are healed and perfect, and this has all been a false alarm? No. So far we’ve seen seizures, breathing issues in N, low tone, and the optic nerve issue. Even now, they are sleepier and weaker than a typical baby their age. But what I am suggesting is that these boys are still exceeding expectations. And they are doing…well.
In other news, Nana and I successfully got to another doctor appointment on time, and without tripping over ourselves. (Seriously, the cords are everywhere). The boys handled their shots well. We even had time to sneak in a (very) brief nap this afternoon.
The boys weighed in at 9 lbs and 7 lbs. On their preemie adjusted scale, they were in the 40-50% and 3-10% ranges. At this visit, they started using a regular chart. So compared to other boys who are almost two months, regardless of prematurity…L is actually in the 3-10%, and N is way below the chart. Two little peanuts! (I’ve always wondered who those tiny babies are, as K was consistently ABOVE the chart.)
Speaking of well looking babies, time for a few new pics!
Sheila Blevins said:
So precious! So thankful for God’s continued blessings on your family.
I know exactly how you feel. Jackson is 11 weeks now and is perfectly normal looking and acting, yet this horrible liss disease sits in the background. I’m learning to love the good days and persevere through the bad. My thoughts are with you.
jeanne cooper said:
Just got your blog. God did a wonderful job in choosing a family for these babies. We’re praying for you all.
Beverlee Dowdy said:
Way to go guys…….keep up the great work. They are precious Melody. Looks like you have some really good helpers too. Love the pictures, love the updates. Love and prayers to you all!