This week we have experienced some other firsts...
I'm most proud to say that Jeremy changed his first diaper! Go Dad! I don't know what made him do it, but he stepped up to the plate Monday night and was a natural. :) Yeah, so he got lucky with just a wet one, but seriously I was impressed at his skills! Of course I had to capture the moment with a pic. He's definitely hired!
We also get to bring clothes for Miles now. So all the cute little things that have been waiting for him at home are now making their way to Parkland. Not exactly what I had in mind, but a way for us to bring home to him since we still can't bring him to home. And to answer the question everyone is asking (including us), we still don't have any idea when that day will be. It just depends on how quickly he can wean off the Methadone and start taking full feeds every time by nipple. Good news is that his withdrawal scores have stayed low enough that he has now gone from 4 daily doses of Methadone to three. They will continue to score him and once those scores stay low for a few days they will wean him again. He is feeding better - not much regurgitation but he's still pretty picky about when and how much he'll take by nipple. Sometimes he eats like a champ, and other times he eats half and then becomes disinterested or sleepy. So then of course they have to gavage the rest.
As for Jeremy and I, we are holding up. We trust in the care Miles is getting, but it's now been two weeks in NICU and it's frustrating not having any sort of idea how distant the light at the end of the tunnel might be. In the beginning Miles' was taking major steps forward every single day it seemed, and that kept us so encouraged. Now it's tough because the signs of progression are a lot more difficult to see, and we just have to ride out the storm. And for me, that storm gets stressful as you sit and wonder when the thunder is going to clap again. Is he really just withdrawing? Could his symptoms instead be neurological? Will he recover completely? It's draining, I can't lie. But with all that said, at the end of the day we still believe with our whole hearts that Miles is one of God's many blessings for us and we trust and pray that He will heal him completely. Here are a few pics from the other night when Miles was wide awake. He is such a joy!