Wednesday, 6/15

Dinky was doing pretty well today so I was able to sneak out of there and make it to our closing. It also helped that he was left in good hands with one of our favorite nurses. The few hours I was able to be there were very productive.

I did meet with our surgeon. It was a good conversation but he wasn't able to offer me all of the reassurance I was looking for. I was hoping he could tell me that Dinky's coding was an isolated incident that won't ever happen again but he couldn't. He explained that Dinky has several things against him, each of which is a "10% risk". So with Dinky's five it just compounds the risk: his tracheomalacia, chronic lung disease, esophageal stricture, reflux and his aortopexy. It is just going to take time for him to grow out of the risk. He did reassure me that he's in the best place if his airway does become compromised. So basically we just need him to eat and grow, grow, grow. His weight gain has not been that great but there hasn't been a long period of time where he doesn't do anything but eat, sleep and grow.

We also talked about Dinky's new G-tube. I can't remember if I mentioned this or not, but because of his reflux he is now being fed into his intestines rather than his stomach. This will prevent formula from traveling up his esophagus. So they put in a tube called a G/J tube (gastric/jejunal). Anyway, long story short, part of the tube that was supposed to be in his stomach was in his duodenum (too bad I didn't take anatomy!) which is likely the culprit for his vomitting the past few days. I have to say, the minute they fixed it he was like a new baby. I was so relieved but frstrated at the same time that his suffering the past few days was needless.

Finally, the occupational therapist came by. They help assess development and teach us things like infant massage which we can do to help him. I was holding him while she massaged his arms and she commented that he was an "old soul". She said she can tell he's just very curious about his surroundings and quietly taking it all in. She felt like he was very "intelligent" and alert and very responsive to her interaction. While no one can predict what developmental issues we may encounter it was a huge relief to hear this feedback. He is a curious little thing. Remember how I have talked about how he would always raise his eyebrows and crinkle his forehead? Well, he has maintained this and it has become his most endearing characteristic. He is something else.