It was June 29th. We were sitting in the children's section of the library watching Cam and Kay play with the trains when the call came. It was Darcie's cardiologist. She had consulted with the other doctors in the clinic and they decided that we couldn't wait any longer for open heart surgery. She said Darcie just had too much damage to her heart and was struggling too much. So even though she was still not even 7 pounds it was time to schedule surgery. They wanted us to come in for another echo, EKG and lab work and they were sending our file to Dallas so we could be scheduled for surgery.
We were able to have the surgeon we wanted but he was out of town so surgery was scheduled for July 17th. We have to be in Dallas for pre op appointments at 9 am on the 16th. They will do more labs, x-rays and another echo. We will get to meet Dr. Forbess and they will take us on a tour to show us where we will be. We were told we have to keep her healthy. If she has a fever or illness at any time during the 10 days leading up to surgery they may have to reschedule. We were assigned a case worker at the hospital to help us with out of state lodging and insurance pre authorizations.
We start the process of getting all the details worked out. It is a bit overwhelming. My call list looks like a medical directory. Social workers, insurance case managers, medical supply, home health, nutritionist, three different hospitals, two different insurance companies, Ronald McDonald House, child psychologists, DDSD, SSI, lactation consultants, Sooner Start, Sooner Success, blood bank, physical therapy, cardiologists, and pediatricians. I call and cancel all appointments for six weeks and have to explain over and over again that we are going to Dallas for heart surgery. No not for one of my parents, for the baby. People are shocked and don't know what to say.
So many people tell me they are amazed at how calm and positive I am. Here is the secret. Just because I can explain complicated medical procedures with a calm positive tone doesn't really mean I am either of those things. I tend to giggle when I get nervous or upset so that covers the concern in my voice. I cry every day. Sometimes it sneaks up on me. I try to be positive and strong for my family and for Darcie but the truth is I am a mess. I don't want anyone to know the real thoughts that go through my head.
So here is the real stuff. And I am warning you don't read any further if you don't want to know the stuff the doctors have to tell you behind closed doors. Our cardiologist asked me how much I wanted to know, how many details of what would happen. I said tell me every bit. If Darcie has to live through it I should be able to at least hear about it. I would rather know ahead of time than wait and be shocked after the fact. She said she always tells the parents to eat while their child is in surgery because you won't want to or be able to eat for a long while after you see them. She will be unrecognizable. She will have so much swelling and trauma that if we weren't told she was ours we wouldn't know her. Because of her size and the probable amount of swelling they may not be able to close her chest so when we first see her everything may still be open. They said to plan on her being in the hospital for three weeks or more and recovery will take six weeks. While this surgery has been done many times and they have successful patient outcomes most of the time it is still open heart surgery and it is invasive and has risks. That is the thought I don't want anyone to know. The fear that I can hardly admit to. We could loose her. A complication, a bad reaction, a small slip and we could loose her. It gets hard to breathe if I even think about it and I have to tell myself it is not even a possibility. She is so strong and determined I just have to believe she will fight her way through this.
I know so very many other families have been through this and worse and been fine. But this is the first time for us and we are struggling. Yes we believe she will be fine and we will get through this and any future surgeries she may need. But it is hard and we worry for her. We have done our research and found the best doctors to help her. I know we have no choice. If we don't do the surgery she will eventually die from heart failure. I know it is what is best for her. So in a week I will hand my baby over for surgery. It is right but it will also be the hardest thing I ever do.
Darcie not very happy about getting blood drawn.
