Yesterday’s bloodwork came back the same except for the test that measures the elasticity of the heart. The result was higher than before Hana was discharged from the hospital. I don’t know if that means her heart has more elasticity or not, but it was elevated above normal and now it is even higher than it should be. But, as the nurse practitioner (who I think is great) said, it is not “crazy high” and they have lots of patients who have much higher results.
So all of this was discussed with our pediatric cardiologist at Kaiser, with whom we had an appointment scheduled today. First Hana had an echocardiagram and then an EKG. Then we had an exam with the doctor. Hana wasn’t crazy about any of these things. She did cooperate by making her grunting/cough noise for our doctor so she could hear it for herself. She said there wasn’t really any change to her echo or EKG. Hana’s weight went up from 7 kilos to 7.235, which is good, except that she has been vomiting, so maybe her weight gain is too much for a vomiting baby. She assessed that Hana doesn’t look like she is retaining fluid and her liver felt fine.
The doctor will call me on Friday to see how Hana is doing. She called the nurse practitioner at Stanford twice during our visit so that they could discuss changes together. She said that no one really makes a decision to change things on their own, that it is always a team decision. They decided to increase her Lasix to 1mL twice a day. They decided to leave her Zantac as it is. She talked with the GI/Nutrition doctor and had me schedule an appointment with him next Tuesday to discuss her calorie intake, vomiting, and the formula type used to fortify the breast milk. She ordered more bloodwork for next Wednesday, one day before I’ll be taking Hana back to Stanford. She wanted to see Hana again in three weeks, which would be two weeks after our appointment at Stanford.
So, I wish what was happening was her echo showed that her heart was returning to look like a normal heart. I wish she was confident that I didn’t need to bring Hana back for a month. That’s what I wish. Maybe that wish will still come true, just not this visit.
One great thing for me that came out of this visit is that we are changing Hana’s night feedings to continuous feeds. The GI doctor may have a different protocol, but until next Tuesday we are going to give her the same amount of milk over the night, just continuously. That means that I don’t have to get up every couple of hours to get a feed ready or turn off the pump! This means I may get more than two hours of sleep in a row! The disruptive sleep is really starting to weigh on me and my brain is having a tough time. My eyes too. I’ve been having a hard time seeing close up and I feel like my eyes are really strained. I am excited for more sleep tonight (hopefully)!