First step to recovery
April 3, 2014 was a very good day and the first step for recovery.
We were told the day before Miles was going to get his ventilator out, so this morning we were excited to see what time exactly this would happen. After patiently waiting all morning and afternoon, the doctors decided his pressure support was not needed anymore. It was pretty amazing to see the tube come out and he was crying. Of course, his cry is not clear, it's like horse they said that's normal after having the tube in for so long. The fact that we heard some type of sound, is good.
It was very nice to see him without the tube on his face and see his cute face again. He still need some pressure support for his lungs, so he does have the nasal cannula. He still needs to feed through the NG tube since he is not ready to drink from a bottle. We are worki closely with speech therapy to get his mouth back to normal from sucking and learning how to swallow. It will take about 2 weeks for him to get back into normal for his voice to come back and his eating habits.
Right now he is strictly on a fat free diet so he is not allowed to drink breast milk, he is on a special fat free formula. They found some fatty liquids in his access fluids which is common so that's why he is on a fat free diet. He will only be on this diet for 6 weeks so for now on I'm freezing my breast milk.
Since this is a hug leap to recovery, he is doing well. They are just watching his urine, stool, and feed to make sure everything has good levels. Also they are trying to keep him at a low sedation as possible so he does not get addicted to them so we try to give him comfort from us as much as possible. He looks great and we cannot wait to learn how to take care of him and ready to get our baby home. It's going to be a lot of work but we are determined to keep this heart and have him live a normal life.