Today, I think I cried happy tears for the first time since the kids arrived.
I’m not sure why. (Welcome to the female mind.) I was putting away some things in the kids’ bedroom, which Mom helped me finish setting up this week. With the decorations on the wall, it feels like a real bedroom for real kids.
There is a bookshelf in the corner with books and toys. The closet is full of clothes I have sorted following a carefully-thought out organization scheme. They have quilts from a friend, art from their aunt, books from grandparents, and a custom wall-hanging from their great-grandma.
This whole room is about Justine and Jayce. My mind is finally making a concrete connection between room and occupants. Our kids will not stay in the hospital forever. Soon, the two kids we visit and hold and feed will actually accompany us back to our car and leave. They’ll live here. In this room, in this house. Our kids.
It sounds obvious in writing, but it’s been so hard to believe that until now. I am excited–truly excited–for the first time. We’ve interacted with our kids for twenty-six days now. I have loved them in the commitment-driven sense of “I would do whatever I needed to do for you.” But I think today was the first day I felt—not just knew with my head, but felt in my heart—like a real mom, with real kids, who would have a real life beyond the NICU.
I cried happy tears because holy cow, we’re parents! We are actual parents with TWO kids! They’re pretty neat! And that is so incredibly awesome, I guess it took twenty-six days for the information to go from my brain to the rest of me.
Speaking of those two kids, there is not much of a specific update for today. Justine is fighting off two bacteria types with the help of antibiotics to make the UTI go away. That will take a few days but is nothing major.
Jayce ate all his food by bottle several times in a row. He removed his own feeding tube a few days ago, so they are going with it and hoping they don’t have to put it back in. It will be another week or so before they try putting him in an open crib. He hasn’t had breathing incidents like his sister, so I think once he’s in the crib, he’ll be close to going home without as much chance for regression.
The medical team performed a follow-up ultrasound on his liver. They still can’t see a gallbladder or bile ducts. They would still be quite small, so it’s possible the camera just can’t see them. The team said everything else looks fine. We have several weeks of waiting left before we receive results from the blood panel sent out earlier this month to verify he does not have any genetic disease affecting liver functionality.
He still has some discoloration. The UTI is gone. His elevated bilirubin came down a bit, but at the last check they went back up. The doctors need to discuss possible causes while they wait for the blood panel. The body’s processes always have natural variance over time, so no one is alarmed at the moment.
Over all, both kids are growing (Justine crossed into 5 lbs, Jayce is somewhere in the 3 range I think). Both kids are eating by bottle—a huge accomplishment in the NICU world!
Both kids also continue developing as individuals, which is SUPER fun to watch. Justine has a highly expressive face. I clearly see my great-grandma when she scowls. She has a surprised look that reminds me of my dad (at least until she gets hair—sorry, Dad! :D) She can move her head and neck with shocking independence for a 36 week infant and nearly pulled the bottle out of my fingers to hold it with her own hands earlier this week.
Also, she loves to eat.
Jayce has already demonstrated a small body will not hold him back from achieving Diaper Blowout Master status. He poops at nearly every care time throughout the day and has violated more than one set of pajamas. I never knew such a small body could produce such a terrible smell.
He loves to hold onto your finger and has a strong grip. As he fills out, I see more of Josiah in him.