I have joined Betsy for the week in Chapel Hill, and Ned is still doing well. I got to hold him for the first time in a few weeks which was great. He actually gained a little weight over the weekend, which we were getting concerned about since he was on somewhat of a backword slide. He gained 40 grams which is a little over an ounce up to Sunday night, then gained another 20 g Monday. Hopefully when they put his illiostomy back in tomorrow (Wed), he'll get the Dellinger/Agner appetite going and really pick up some weight so they rest of his body/organs can grow. For now, he's in a little spit up mode, and Betsy is certain it's her breastmilk making him coliky like Jack was for several weeks. The doctors are just thinking it's normal spit up for now, and maybe that it's just the change back to breastmilk. The NICU ran out of breastmilk while Betsy was at home this weekend and started him on formula, so now we've hauled the milk truck back up to UNC to resupply them. We have been storing the milk at home since the NICU/PICU started running out of room.
Betsy and I have just been in awe with all the prayers being lifted up for Ned and the rest of our family. As we look back at where we've been so far on this journey, it is just awesome how evident it is that God has been, and is in, control of this situation. Looking to what lies ahead, we are confident He will continue to work in Ned's life. We continue to ask for your prayers for our family and the journey that remains.
Well, we're heading back to the hospitol, so we'll post later on.
Travis, Betsy, Jack, and Ned