Today we got transferred to Nationwide Children’s NICU.
Earlier this afternoon, the doctors informed me they want to do another ultrasound on Jayce’s liver. His skin is still too red. They say it’s because of high levels of bilirubin, a substance made during the regular breakdown of red blood cells. It’s supposed to pass through your liver to other parts of your body.
It’s not uncommon for infants who are on an IV to have elevated levels. But it might also indicate a liver problem. The previous ultrasound showed a healthy liver, but the doctors did not get visual confirmation it is properly connected to the gallbladder.
Docs would like visual confirmation everything is connected so they can rule out extreme concerns. Mild medications will help him balance out if there is no crazy underlying issue. If the liver is not properly connected, he’ll need surgical intervention.
Little dude is going to kill Mamma with all this drama.
Because of the liver questions, they are moving the twins to Nationwide Children’s. Their techs are more experienced with ultrasounds on tiny bodies. And if he needs surgical intervention, their facility can provide it. Even if they find nothing, they’ll stay there for the rest of their NICU journey.
To be honest, I’m not doing great with this change. This NICU is an open floor with many patients rather than a private room like Riverside Hospital. It’s overwhelming. So many kids in so many bad situations. I struggle to keep it together around my kids; hearing all these other little ones is too much to take. I loved having a private place to cry because I hate doing that in front of other people. Now I feel as if we are on display.
Today did have some. Jayce is off respiratory support!! I am so glad his tiny face is finally free of that mask. He is also wearing real clothes, like his sister. I can bring him his own things and finally feel like he’s part of our household and care. Along with clothes and no mask comes the freedom to be swaddled, which means grandparents can hold him! Expect to see pictures of him with family as we catch him up on the photographic attention his sister has already received.
Justine continues to learn how to drink from a bottle. She has a ways to go but every day is better. Jayce will try his first bottle tomorrow.
We are tired. Today was a long day at the hospital for me and an interrupted work day for Josiah. We want the kids to come home. We feel yanked around. Question marks around Jayce’s heart, then good news, and now more questions about the liver. I’m so weary.
We’ll keep you posted on test results tomorrow. This is not fun, but I know God is in the same place He was yesterday and the same place He’ll be tomorrow and the day after that.