It has been a roller coaster of emotions this week for little Evie. The short version is that the doctors are quickly moving up Evie's timetable for procedures because the MAPCAs (described earlier in this post) are supplying too much blood to her lungs, forcing her heart to work too hard. She is stable right now, but there is a fear of heart failure if we stuck to the current two-month surgery schedule. Evie has been placed back on IV's and is no longer taking formula from a bottle or through the NG tube, so that her body is not spending energy trying to digest the food.
Evie is going to be transported to Christ Hospital on Thursday afternoon and an angiogram will be performed as soon as possible; as early as Friday, but definitely by Monday. Based upon what the doctors see during the angiogram, they will determine when the unifocalization surgery will done. Possibly as early as next week.
The twins are going to be baptized in Edward's NICU on Thursday morning at 10AM, right before Evie is transported to Christ Hospital's NICU. Sharon and I appreciate your prayers for little Evie that all goes well.
Here's a cute a little video of her squirming in her bassinet that I shot earlier this week on Tuesday, in one of her rare active periods (she usually sleeps through our entire visits with her).
The long version of this week's of events is a series of good news and bad news. Evie still wasn't gaining weight, so a feeding tube was introduced (i.e., a nasogastric feeding tube or "NG tube"). Then on Monday, Sharon and I were told that she could possibly come home on Friday, but Evie would still need the NG tube, and that we would have to be trained in how to insert the tube into her stomach in case she ever pulled it out or when it needed cleaning.
Evie would also need to have a heart monitor attached to her and we would have to take the monitor everywhere we go (in a little backpack). The NG tube training seemed daunting and overwhelming, but we knew that other parents dealt with worse, and it seemed like a small price to pay to have her home with us.
We were told that the good news is that she does not have DiGeorge syndrome, which can be rare in children with congenital heart defects like Evie's. However, several other specialists were going to see her because her phosphorous levels were irregular, and there was some concern about her kidney function. However, an ultrasound of her kidneys showed no deformation, and she's urinating fine, but there is apparently still some sort of concern about her kidneys. We were told that "it's probably nothing," but they're checking anyway (they're still checking).
Then, Wednesday morning, our cardiologist called to inform us that he wanted to push up her timetable because her heart was working too hard (as described above).
It's been a rough week for Sharon and I, and we are very grateful for all of the kind support our friends and family have shown this week. The staff in Edwards' NICU has also been incredible to us and we're lucky that Evie is in such good hands.