Every Tuesday Magdalena's hospice nurse comes to check on her, and I was ready for today! First, Magdalena pulled her tube out of her nose again! After talking with her nurse, we decided not to put it back in again, but just to feed her whenever she gets hungry and allow her to take in as much as she physically can. She does need to gain weight. However, putting on weight will cause more strain on her heart, so our goal is for her to be comfortable by eating enough to allow her to sleep well, feel well, and to fill up her diaper enough during the day. We are not going to just "force" calories down here.
Second, we may take her apnea monitor off during the day soon. She hasn't had spells in awhile and may have moved beyond that stage. It isn't our highest concern anymore. We just want to be able to enjoy her beauty and sweet personality without cords and tubes attached. Sometime in the next few days we are going to download the information from the monitor so that a doctor can tell us how many times she has had a true apnea spell while it has been on.
Although I will still ask many questions to feel 100% wonderful about major decisions Noah and I make concerning surgery, I am already feeling a little more peace about not having it. The nurse reminded me of the many complications she could possibly have during it that a normal baby wouldn't have, which would take her life instead of giving her longer time. Early on Noah and I agreed that we wanted to just enjoy her for however long we had. We didn't want to hold on for so long that she had to endure more pain and that we were focused on what we could do to fix the unfixable problem and forgetting just to enjoy her.