We found out today that Capri has a second diagnosis. She has severe pulmonary valve stenosis. Which according to the doctor is a bigger issue than Ebsteins. On a positive note though her surgery yesterday corrected that and it may explain why her heart is so big. With pulmonary stenosis your valve is very small (hers was 1ml). So in utero her blood couldnt pass through that valve causing it to go back to the heart. The drs hope is now that that is corrected, as she gets older her heart may get smaller and her case may be less severe. Nothing is a guarantee but again its hope. I am cautiously optimistic that things are going to turn out ok for our baby Capri.
This weekend we will just wait and see how she does. They took her back off the prostaglandin this morning and are waiting for the valve to close. As long as she does well we wont do another echo until monday. Her little body seems so worn out. She had to have her first full blood transfusion today. She has had several platlet and plazma transfusions but not full blood.
Overall our family is finding our new normal. Ive got my crying down to only a couple times a day *as long as no one talks to me. Our son had a hard time with things tonight. He hasnt wanted to go in and see Capri very much, he gets squirmish and says no very quickly. Tonight we were at my father in laws for his birthday and A was crying over the smallest things. I took him into the bedroom and we laid down and talked about what was wrong. He said he didnt know and then looked up at me with his red swollen eyes and told me that he didnt want his sister to go to heavan. I asked him if thats why he was so sad and he said yes. "my sister had surgery and now she is going to die" "i dont want her to go to heavan i will miss her". I laid there with him and cried. I told him that the surgery was to help fix her heart and she was doing so good. we watched a video on my phone that i took of her with her eyes open. We talked about how she might go to heavan but she might not. And that if she keeps doing so good and her heart keeps getting better that we will get to take her home.
He has been so un interested in seeing her that i just assumed he didnt understand what was going on and i wasnt going to bring that stress to his attention. Turns out he has been listening to mom and dad and knew exactly what was going on. I wish i could put a magic blanket over my family and protect them from all of the sadness.
I found a group on facebook today called intermountain healing hearts. as i was reading through the posts i am realizing all of the other famlies that are in similar situations as us. There babies have made it so far, so ours can too. Someone has to be in that 5% so it might as well be us!