Amelia before her tracheostomy was in pain, couldn't breathe, and was so touchy that nurses had to rush diapers changes with fear that she would stress her heart from getting so upset.
Amelia after her tracheostomy is a completely different baby! I don't have the words to explain fully, what it is like to not have to see your baby in pain everyday. I would leave the hospital to shower and fear that when I got back, she would be surrounded by doctors, who were worried about something. Any time I was away from her, I worried about my phone ringing and telling me that she was having more problems. This kid deserves a break. You wouldn't think that having a trach put in wouldn't be considered a break, but it has saved her, I think. God is so good. I have been praying for peace and comfort for my sweet girl, and God provided just that.
Since her trach was put in on Friday, Amelia has done so well that her doctors are talking about discharge. Can you believe it? Just last week, I would have never imagined Dr. A even considering it, but he is confient that she will do well. IF this happens, it won't be for another month or so. There is so much that has to come together to get a baby like Amelia, home. She is going to need mutiple machines to check her weight, SATs, provide humified air to her trach, a feeding pump, and a home nurse. That's a whole lot of crazy.
Dr. A would love for her to wait until 6 months old to have her Glenn surgery. Before, we were going to stay in the hospital until 3-4 months old and have the surgery, but Dr. A said that it's best to wait until 6 months. That way she is that much stronger.
In order to get home, girlfriend needs to eat. She had a swallow study done on her yesterday and they saw that she silently asperates. Meaning, she asperates the milk without coughing. Everyone thinks that she needs to get the G-tube. If you remember, the G-tube surgery is the one that she went for, and came back on ECMO. They plan to do things differently, plus they have her on two blood thinners this time around. So, less of a chance of clotting. You know I am scared out of my mind, but since it is something that she needs, it only makes sense to get it done know, rather than when she is weaned from her pain medicine and have to go back on it.
I am in no rush to go home, but the idea of being home with my WHOLE family, makes me want to cry happy tears.
Prayer requests:
-We just need her to keep up the good work.
-Her g-tube surgery is next Tuesday the 11th, so if everyone could remember to say a prayer for her, that would be great!
Thank you, everyone, for your continued prayers. They're all so appreciated and loved!!
Love y'all,
Kelly
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