Yesterday was Aidyn’s 2nd CAIR clinic appointment. We discussed Aidyn’s growth rate and his weaning from the TPN for an additional hour.
Aidyn weighed 3.39 kg (7.5 lbs) and measured 20 inches. Good growth, but not at a rate the team is wanting. He is not going up the growth chart like before. It’s unsure what Aidyn may be losing from his output, so the dietician will be adding more nutrients and calories to the TPN starting next week. Hopefully, this will get him back on track. We will keep the feedings the same, 15cc’s of breast milk 5 – 6 times a day.
For about a week, Aidyn had been off his TPN for one hour. He was fed a bottle 20 – 30 minutes before being unhooked. He seemed to do ok, but it was hard to tell. The time he was taken off is usually a time he naps, so his slight irritability and sleepiness looked like he was just tired. However, there were a few days where Aidyn appeared scared and a little shaky. Yesterday, I was able to really observe Aidyn off TPN with better judgment because he had a 3 – 4 hour nap right before being unhooked. Well, after a half hour, Aidyn started to act agitated and his hands were a bit shaky. With a pacifier, he was better, but wanted to either sleep or just look off into space (he is usually curious, looking around when awake). Today I talked with the PN nurse, Denise, and she suggested we put Aidyn back on the TPN for the 24 hours until we come to the Wednesday appointment next week. We will look into testing his blood sugar while he’s off TPN. We’ll take baby steps.
Wednesday, Aidyn smiled at me for the first time! Not a gassy one, a real one. It’s funny, I wasn’t the first to receive his smile, his bear was. It’s been with him since he was in the NICU in Arizona. He’s like a little angel watching over him. Aidyn is enjoying the play gym I got for him. In just a couple days, he figured out how to move the dangling toys. I’m very proud of him.
Thanks again everyone for all the positive thoughts, prayers and support. It keeps Aidyn and the family strong.