In Charleston

Well a decision was made about Emma, but it wasn't exactly what we had expected. I got a call from MUSC Children's Hospital Tuesday morning asking us if it was okay to move Emma's surgery up & of course I said yes. The lady from the surgeon's office informed me the first date available would be Thursday, which of course meant we would have to leave on Tuesday evening but I went ahead & accepted the date. So as soon as I got off the phone with the surgeon's office at 8:15am I started making phone calls.

I of course called my husband first, then my mom & my oldest sister. I was fine while talking to Chris but while I was talking to my oldest sister Karen, I broke down & started to cry. It was starting to hit me that I had a tone of things to do & only half a day to get them done. To make matters worse, Emma had her 4 month shots the day before & woke up at 3 am with a 100+ fever. So Karen offered to keep Emma so I could quickly wash clothes, pack or run any errans I needed.

It helped me tremendously for my sister to keep Emma & I was almost ready when Chris came home from work. We left our house at 6:30, dropped the dog off at the in-laws (they love keeping him + he has never been boarded) & arrived last night at 11:30pm. Unfortunately Emma's pre-op appointment was at 9am & she didn't settle down until after 1am, so we were all very tired today.

Today they ran an EKG, a sedated echo, lab work & chest x-rays of Emma, which made for a very long day & she did great. One of the doctors who will be working with Emma while we are here came to speak with us & she told us the surgeon was considering repairing her VSD's instead of using a PA band & we were a little shocked but happy to hear the news. He was hoping to only do one surgery instead of 2 but he would know for sure once he saw all the results from her tests.

We met with the surgeon around 4pm & he told us he decided not to repair her VSD's now & to use the PA band. He says she has 4-6 holes at the tip of her heart & they would be really difficult to patch so he wants to wait, which is what we were originally told in Feb when we were here for her heart cathe. The surgeon says he would probably want to repair her VSD's in the next 6-12 months once her body & heart have time to grow. He says the smaller holes may close on their own in time but the larger hole will be the one that needs to be patched.

So Emma should be here about a week, as long as she recovers from the surgery well & starts gaining weight. They told us again today that if her feedings still don't get any better they will bring in specialists to help her. We can't wait for the day to be able to feed her without fighting & hopefully tonight will be the last time.