I don't even know where to begin this post. I have been thinking that I need to, but I am struggling hard to find the right words. About a week ago, Carl and I started feeling separately that we were no longer sure if we wanted to do the surgeries for baby Cale. We were both feeling so discouraged, and had thoughts and feelings that we didn't think he was going to make it - even if we did the surgeries. Then last Sunday, we were able to discuss our thoughts and feelings with each other, and were surprised to know that we were both feeling the same way. I have been in contact with other families and moms that have children with HLHS, and I have looked at a ton of different blogs, so I feel like I kind of have a sense of different experiences we would have if we chose to do the surgeries. So, I decided to research our other option, and see what it was like for others who did not choose surgery. I still felt like I wasn't sure what we should do for Cale. We also knew that we were going to Primary's later that week, and we wanted to talk to the people there about our options as far as what would happen if we didn't choose surgery.
Needless to say, this week has been a heart-wrenching, faith-building week for me. I have been torn to pieces, I have felt so much love and sadness for my baby, but I have also felt peace and comfort in knowing what we should do, and what will be the best thing for our family.
At Primary's they told us everything looks about the same with Cale - so really nothing new to report there. We asked them, out of all the heart defects there are, where does HLHS rank in severity? They told us that it is about at the top - it's one of the worst ones, which is what we already kind of knew.
We asked them about our options, and what we would do if we chose not to do the surgeries, and they gave us a lot of information about that. They are so amazing there, so supportive of our decisions, and our feelings and thoughts, I really appreciate the people that we have met and been able to talk to there. As we learned about the option to do what they call "comfort care" to let the baby be born in Logan, possibly come home with us, and have him with us until he passes away, we both continued to feel good about not doing the surgeries. We feel like Cale only needs to come to this earth to get his body, and then he can go back home to watch over our family, and continue the work that Heavenly Father has for him.
Please continue to pray for our family, it has helped so much, and we have felt your love and support through this very hard time in our lives.
Almost done with chemo update.
5 weeks ago