17 weeks

They went down on Grace's flow today, back down to 2 liters on a blender with the Nitric still at 20. Sildenafil  has been being given for over 24 hours now, such a low dose but so far so good. I dont know when they are going to get an ECHO I don;'t know when they are going to wean Nitric.Grace has been ok. We napped together for a bit today, one of the sweetest things about having a baby is falling asleep with him/her on your chest, I'm glad that's one thing we didn't completely miss out on with her.
she likes having kisses on her cheeks and chin, she sort of smiles for it. I might take a purposeful blogging break, to be honest my hearts not really in it right now. day to day  nothihng really changes, pphn stays the same, stomach stays the same, her mood stays the same her reflux stays the same. Im sort of quite discouraged by the lack of progress lately, and just feel like taking a break, so I suppose no news can be considered good news or exactly the same news. if anything astronomical happens, I'll come back.

5 am phone calls

Are never any fun especially when they are from your childs surgeon. Grace had another huge desat epidode this morning but I guess it was worse than ever and they put her back on high flow and also back on Nitric Oxide and gave her a blood transfusion and are giving her extra diuretics. They are going to try slidenafil again and see if maybe she can tolerate it yet. PPHN is what is holding her back from home, though it is much more controlled than it was, it's still not controlled enough for her to be off of Flolan or to not desat like she has been doing. At some point she will outgrow the PPHN as she gets bigger but I'd kind of like her home before then. There are 4 more weeks left before school starts and honestly I really thought we'd have all 4 of our kids home for a bit before then, but its not going to happen.