This is how we bond.
This helps us forget about the tie changes and the trach changes. It helps us feel normal and that there is nothing wrong with us.
This is his only voice.
This will alarm me if he stops breathing or has labored breathing, and it will let me know if his heart rate is too high or too low.
This is how I set up to change his trach tie. We do this once a day.
His emergency equipment must be here in case something goes wrong.
I don't like it; doing this makes me feel bad, but it must be done for his well-being.
This is his room. We share this room; I sleep in the corner.
This is some of his equipment. There is emergency information on the wall for his nurses and me.
We cannot hear him cry; the signs tell us what to do if his numbers go low or high. One sign has his address in case we need to call 911. Above his crib is a milestone chain from when he was in the NICU. He got a bead for each milestone at the hospital. The last bead is a house.
This is tummy time. This shows me that even with all of his medical equipment and tubing, he is still able to be a baby and do normal baby things.