Surgery is Set - October 5th

Today was a good day for Emerson.

She slept, she was awake, she pooped, we watched baseball, she gave daddy a few smiles, she had everything changed (blankets, tubes, tape around her mouth), all while keeping her heart rate down and moderate. She was even in the low 100s when she was in a deep sleep.

She was moved last night down the hall again to room 9, literally the last room. The end of the hallway kind of gets forgotten about. The nurses are not suppose to leave the room with Emerson, a few times our nurse had to stand at the door and yell "Hello! Anyone! I need meds!". There was just no one down on our wing. The main nurses station is in front of rooms 1 - 5 basically. The reason for this is that another 13 year old girl got a heart transplant (which is exciting in itself), and a few other babies had surgeries. So rooms 1-4 were very busy today. So, Emerson is not on the top of the list in terms of management at the moment, and her numbers look good still, so I guess that is a good thing. Still, room 4 is a good room, and I do miss it.

We found out from our nurse because she got a memo saying to stop Emerson's feeds at midnight on Sunday that she will be having surgery on Monday. We are excited about this, even though it is surgery, because we have direction. This is until we actually met with the surgery doctor himself who will be doing the surgery. The surgery is called a PA Band and the surgery itself has been around for a long time. However, it is fairly new in the game of dilated cardiomyopathy. A group in Germany started to do them, and found some success, and so Dr. Bailey (the guy who basically started heart transplants in the 80s at Loma Linda) went over to Germany to check it out. He brought this surgery to Loma Linda now. The doctor going to do the surgery has only done it 3 times in the last 2 years; all different circumstances, all with positive results one way or another. And he said that this is major surgery. Still, there is not a lot of research behind this type of procedure with what Emerson has. In fact, we are even signing a consent form so that they can use her data and information, and send it to Germany as well. He told us that it is a 50/50 chance that it works. And by "works", it means for a certain amount of time....even if that is just weeks. We knew that this procedure is meant as a stop-gap until Emerson can get a new heart. I just had my mind around that this surgery would have better odds. This definitely shell shocked us. We cried.

He went through other medical procedures that have been done. Most of them either don't have good success rates, or just aren't done on small babies such as Emerson. Take a VAD, this has high success rates in older children, however, they don't make VADS small enough for Emerson's heart. However, Emerson's heart is so bad that something needs to be done; and so we head into this experimental surgery and see what it has to offer.

I still take stats like 36 babies out of 100,000 get dilated cardiomyopathy specifically. I take into account that both our families don't have heart disease like this. I take into account that really nothing medically proven can be done, and we just need a heart. I take into account how rare this all is, and I am still having such a hard time with it. When I look at my daughter and her beautiful face and her beautiful smile and her beautiful eyes, and her little personality coming out, I just can't stress enough with how much I need her in my life.

And so, I pray harder than I have before. I place my hand on Emerson's heart and I beg God, I demand God, to please provide a miracle and heal her heart. I teach about miracles all the time, just please grant me one. Use my hand and heal her heart. Please.