Surgery day- Open Heart Surgery #6

Today has been a day of a lot of emotions. It started last night. We took a walk and watched fireworks, then we went back to our room to settle in for the night. The tears started, along with her anxiety, the monitor went off because her heart rate was up, and when we tried to ease her fears, it just seemed to make things worse. I finally had her daddy tell her goodnight, and sent him back to the Ronald McDonald's House, which left, Lily, grandpa, and myself in the room. We were waiting for her stepdad to get here. He finally made it, he gave her some love and kisses, got her settled into bed, and then him and grandpa left to go to bed. Normally I turn the TV off and have her go to sleep, but I knew that wasn't going to work last night, so I put a movie on, pulled my recliner chair next to her bed, took her hand in mine, and we both fell asleep like that. I woke up several times in the night, to just check in on her, make sure she was doing OK, which she was. I was awoken at 4:10 to her crying, because we lost the use of her IV for blood draws, it was still usable for meds, but unfortunately, we had to stick her for a blood draw this morning. That set off a domino like effect this morning. After that, everything made her cry. She cried when it was time to use the horrible wipes for surgery prep. She cried when it was time to get into the wheelchair to go do to pre-op. She cried when we met the anesthesiologist and she cried even more when she found out mommy couldn't go back to the OR with her, like I have done the past few times. I wanted to cry with her, I have wanted to cry several times, but that is not a luxury I will allow myself, because Lily needs us all strong right now. She was taken back to the OR at 7:00 am. It took them a good amount of time to get all her lines placed and then to be able to get through her sternum, since she has so much wire from her surgeries. We got the call at 9:00 am that she was finally on bypass. Nigro told us to expect for a 5-6 hour surgery. We still aren't sure what the course of the surgery will be. We came to San Diego with the intentions on him doing the Ross Procedure, but after her cath and some further images he said he wanted to get in there to make sure that was the correct thing to do. He said we might end up retaining her mechanical valve after all.

Trying to comfort her before surgery

Grandpa, Lily, Mommy

Stepdad, Lily, Mommy

Lily & Daddy

My thoughts on it: If we retain the valve, we will continue with life as it has been, and watch and pray that this hole or more holes don't happen over time Which is why I didn't go to Boston, or CHOP, or PCH, because I didn't like the thought of "patching" the hole.

If we go with the Ross procedure, it isn't a guarantee that she won't have to have more surgeries in the future, but it would give her a future of life without blood thinners. Which is what we want for her. Because one day she will want to have children and being on blood thinners is very risky during pregnancy. I know that is way down the line, but as a mother, I try to look at my children's lives as a whole. Lily's life is complex and if we can make that some what easier, somewhat more normal, I want to give that to her. 

I sit here in the waiting room, again, with my heart in my throat. You never realize how long 5-6 hours are, until you are stuck waiting for word on how your world is going to change again.