Ruby Valentine: PCH

I ended up taking Ruby to the PCH ER on Tuesday morning even though I was really trying to avoid it. Our sweet neonatologist (now friend) met us there to give me moral support. Thank heavens. She's such a great person, i am very grateful for her and all she's done for us. They ended up admitting Ruby on Tuesday afternoon.

At first we thought it all had to do with her heart and it was working overtime and wearing her out. Then we got a second opinion by another cardiologist who said it didn't look like the ASD (hole) was as big as I was told and the thickening of the ventricle wasn't a thickening at all, but trebeculations in the lower left ventricle. We heard this in the NICU, but no one seemed too alarmed by it so it was really put on the back burner and we were just told to follow up. It wasn't until we talked to the cardiologist here at PCH that he told us what that meant. It is in fact tied to cardiomyopathy, which is horrible, worst case scenario. I immediately started crying when i heard him say the "muscles may stop working over time" and "possible heart transplant". Best case scenario her trebeculations don't get enlarged and don't bother her for the rest of her life. There is no telling what will happen with Ruby's body especially because there is not a syndrome tied to her. So we just have to wait and see...and obviously pray for the best. This does mean that there is nothing emergent going on with her heart at the moment, which is good.

Since we got here she's had a fever and a horrible cough and has been spitting up like crazy. Her feeds were moved to 24 hour feeds but she was still spitting up, so they then cut them in 1/2 and she still spit up. As of now they have been stopped, but today they are going to put in an NJ tube, which will go directly into her small intestine vs. the stomach so there isn't any spitting up. 24 hour feeds are a must in this case because the small intestine can not expand like the stomach to hold larger amounts of food. I don't love 24 hour feeds after getting home. They are such a pain with 3 other kids schedules and getting her away from her bed for stimulation. Who wants to pack up milk every time they walk into another room with the baby. I really hope that it's a short term thing like planned until she can tolerate foods...and until we can get the GTube.

We will be here at least through Monday maybe longer depending on the toleration of feeds and if her GTube surgery gets scheduled earlier. They had talked about putting it in while we are in the hospital.

My poor Ruby. She's been so uncomfortable. It's awful that I am helpless. She has an IV on her head. I have heard that that's a great place for babies, but it's not my favorite. I have to be super careful holding her and I have already pulled it out once. On top of it all I got sick too, so I am doped up on Tylenol cold and flu, and trying to hold Ruby and just get her comfortable. It's really a walk in the park, let me tell you.