Today is one of the worst days in a mommy's life. The orthopedist finally came to see Andrew this morning and they called me with his diagnosis. He has something called arthrogryposis. It means that his nerves and muscles are not connected in his arms and legs and the doctor says that he will never be able to move them more than what he can do now. Which is some limited movements of his right arm and hand, VERY subtle movements of his left fingers, and nothing in his legs or feet. His scoliosis is not caused by any specific bone malformation, so this kind of curve is one that will get worse. It is severe enough that they cannot fix it with casting or braces.
Things got a little better tonight. I was so scared to go and see him, I think just because I didn't feel like I could handle more stress. But I am glad I went because I felt better after seeing him. Andrew has officially broken a record, he has survived longer than any other babies that have been at the Centennial nicu with his condition since the nicu started there 18 years ago. So even though I knew it, he is an "official" miracle.
His blood gas at 4 was good enough that they were able to turn the ventilator setting down to 50. His oxygen is still around 50%. We got there shortly before 6 and just as we were getting ready to leave, he started trying to suck on his feeding tube and vent tube. It was so nice to see him do something new today, I really needed that.
We left and ran some errands and came back, and when we got back at 8 I got to hold him! He did really well with it. I held him for about 15 minutes or so, he was so small that it was just like holding a blanket or something! I loved every minute though.
He got weighed while we were there. His bed has a scale and they just do that since he's too fragile to lift up onto a regular scale each night. Tonight he was 2 lbs 2.9 oz. Since he's had a significant loss for 3 days in a row now, the doctor is going to start adding HMF (human milk fortifier) to his milk. The nurse basically said it's like added calories.
No comments:
Post a Comment