And yet more proof that our NICU journey is far from over...
We got news today that Addison will be transferred to a different hospital once her brother is discharged. (I am glad that they will be keeping them together for now.) She has a cleft palate and severe reflux, either problem can create issues all their own, together it's making for one miserable baby. So what does this mean?
Right now all we know is that the plan is to start next week by trying to move her feeding tube out of her intestine and back into her stomach and see if she tolerates it. (They have already started her on an antacid to help.) If she tolerates that then we may escape any further treatment for the reflux. And then there is the bottle feeding...because of the cleft palate it may not be an option, but we will have to see. As we have learned from day one, everything seems to be a wait and see game. It is very possible that we could escape any treatment, BUT (and that's a very big BUT) the Neo doesn't think it will be able to go untreated, surgery for the cleft palate seems almost inevitable. (And my research points to the same conclusion.) In the meantime I will pray for a miracle and we will get thru this one day at a time.
As for Mr. Blake...yeah he's planning a jail break. Rumors are starting to fly that little man may be on his way home. We have reached a point where we are able to attempt a bottle at every feed now so if he can take a bottle full time, that feeding tube is coming out and he will be one step closer to coming home. From there he has to be 5 days Brady free and pass his car seat test. He is back on 1 liter regular cannula, which is something that he could come home with, but the plan it to try and take that away too this weekend. Right now they are saying he may just need the extra help with the oxygen while eating and could come home with it for that purpose only, but they are promising to work with him and see what he really needs.
Oh and it gets better.... DADDY GAVE HIS FIRST BATH!!!!! Yup you read that right, Jake bathed both babies for the first time last night and tonight! He did a great job and the babies enjoyed every minute. He also feed Blake half of his bottle tonight and got a burp out of him!
It's all bittersweet. They have come so far and we are so very proud. But all of this is overwhelming and I will admit, in the beginning (when I was pregnant) I never thought I'd come home one baby at a time. I know that Ms. Addison won't be far behind, but this is soooo not how I planned it. Please keep those prayers coming, we know we wouldn't have made it this far without all the support.