Life with the Barfields: Our Wait for the Glenn

Josiah’s Pre-Glenn cath was done on a Wednesday (April17th) and we did not make it to the CSU until Sunday (April 21st). Not because they didn’t have room, not because Josiah wasn’t stable on his milrinone, but because one of his doctors believed he wasn’t tolerating his feeds…I should tell you that he had only thrown up once in 2 days and had retched once. I could go in to a whole long story about how incredibly irritated and frustrated Anthony and I were about that situation, but the good thing was, we finally did make it to the stepdown unit. I do believe that that whole issue was where I began to speak up and let people know what I thought about things so I guess that would be the good thing to take away from that.

The next day (Monday) was our first full day in the CICU and we had Dani for our nurse. This was the first time we had met her, but instantly loved her! She was the one who said we could and should put some clothes on Josiah (duh, I guess I didn’t think we could with his central line in his shoulder area) and the first nurse that ever took us on a field trip! I knew that the hospital always had fun things planned for the kids, but I never thought about taking Josiah to any of them since he was a baby. That morning Dani told me to make sure Josiah took a good nap today because the miniature farm animals would be out in the garden and we were going to take him to see them. I remember saying “we can take him to that?” and she replied with “absolutely, I just have to go with you since he’s on milrinone”. So, at 3:45pm, mom, Josiah, Dani, and myself all made our way to the garden. It was a beautiful day outside and it was so nice to be able to take Josiah out into the sun! I don’t think he cared a thing about the animals but was more interested in just looking around at the flowers and probably breathing in fresh air!

Josiah with the HUGE, fluffy bunny!

The next several days consisted of many walks through the CSU halls (well, really one big continuous hall). Everyone got to know Josiah as we would stroll with our IV stand from one end to the other. Before we were readmitted to the hospital, Josiah hadn’t really learned to do much. He would smile and make a few noises but that was it. While we were in the CSU however, Josiah started to do so many things! He began to “talk”, chew on his fingers, smile a LOT, and was just a lot more interactive. It was so neat to see him learning new things everyday, but sometimes it would make me a little sad that he was learning these things in the hospital and not at home. But, then reality would hit me and I would have to tell myself that I should be thankful and grateful that my child was still here and able learning these things.