Scarlett's still doing well off her breathing tube. She has had a couple episodes, though, when she gets secretions stuck in the back of the throat and her oxygen levels drop, but after suctioning her out, she is fine again. That is something we will have to deal with until she can swallow on her own, (if she ever gets to that point). It really will depend on which neuromuscular disorder she has (the doctors are pretty convinced that is what's wrong with her). Some of them improve with time and some of them get worse. We are definitely praying she has one that will improve with time.
And with that said, tomorrow we are transferring her to Primary Children's Hospital to figure out her diagnosis. Davis' NICU, though, has been absolutely wonderful! They don't deal with babies like Scarlett very often, but you wouldn't know it. We have really grown to love Dr. Berger, Dr. Simmons and all the nurses, respiratory therapists and occupational therapists and everyone else that has helped Scarlett. How can you not love someone that loves and cares for your baby when you can't be there? I am truly grateful for them and will miss them immensely. But we knew it would come to a point when they could do all they could do and it has come to that point. All the tests they have done so far have come back negative and all that is left now is to do a muscle biopsy, which is only done at Primary's. And there is also a whole team of neurologists and neuromuscular specialists down there that have seen babies like Scarlett before, so we are hopeful to get a diagnosis and help her in any way she needs.
These last few weeks, I've felt myself grow inside. I've grown in my faith, hope, and in trying to accept Heavenly Father's will. My love for Jon has grown and my older children as well. But mostly, my love for Scarlett has grown and my desire to help her in any possible way. We are fortunate to have Primary Children's hospital so near. I now understand why families from out of state drop everything to take their child there. Jon and I talked last night that if we had to move out of state to help Scarlett, we would also do it in a heartbeat, although I'm grateful we don't have to:)
I am learning to trust in the Lord. Some days it honestly feels like pure torture not knowing what is wrong with Scarlett and if she will improve over time. We know we will get some answers with a diagnosis, so I try not to think about it too much.
I was reading this blog the other day about a mom whose baby was born with a rare genetic disorder. And although she had such strong faith, she often found herself asking not "why me?" but "why?"
That is how I've felt these last few weeks. Why was Scarlett born this way? Why must she struggle? Why must we grow in loving her more and more each day, just to have her taken from us before we are ready, (although I don't know the answer to that one right now, that is how I feel because I fear her diagnosis). I feel afraid to love her so much, even though I do, because I don't want to go through the heartbreak of losing her. But I've learned that even though this experience has changed our lives, it hasn't ended our lives. Scarlett is still here and she is improving, even if it is just a little each day and I'm learning that families are forever. This life isn't the end. I'm learning that Scarlett has a purpose in life, I'm learning that miracles still happen and I'm learning that life is still beautiful amongst all the sorrow, we just have to look for it, especially in Scarlett. We have to keep praying for her to keep improving and not give up hope and make every moment count. I'm learning to slow down and look into my children's eyes when they light up.
It's funny that a baby can teach you these things.
