Woe is me. Those are three words that I’ve always despised, yet I think I’ve talked myself into a corner of feeling sorry for myself. Just acknowledging that makes me feel embarrassed and ashamed, but I’m going to stop there. I would like to have a better, positive, healthier attitude. It is true that there are a lot of moving parts in my life right now. It is true that I probably need more rest. It is true that Hana has a sick heart. It is true that I have not yet been able to mourn all the things that I had or thought I had and have lost. I do need to take the time to let some pent up emotions run their course. But, I can’t let this consume me. It’s not good for me and it’s not good for Hana (or Poppy and Paul).
So, now I’d like to have a healthier attitude. I’d like to celebrate the things that have gone right. I’d like to accept our new normal and continue to seek moments of joy and happiness.
Today Hana turned 8-months old! She slept fairly well and was pretty cheerful when she woke up this morning. I gave two of her medications and then we had some yogurt, which she loved again. Then, 30 minutes later, I gave two more medications. I waited until 10am to start her first feed of the day and I only gave her half. An hour after that I gave her the rest of her feed. We spent the rest of the day trying to get back on her normal feeding schedule. But she didn’t vomit once the whole day! It is the first time in a week!
I also got to take a nap today which really made a huge difference for me. We took a nice walk, Hana had peach and prune baby food, she napped poorly and cried when we tried to put her in the bath (with bath bubbles, I don’t get the sudden crying). We are still having a problem with her NG tube leaking. The tube has two ports on the end where we hook up her feeds and where we administer meds. One of the ports keeps popping open. When that happens, stuff leaks out and makes a mess. Sometimes meds leak out (so far it has only happened with Zantac and iron). Sometimes the milk from her feed leaks out. It often makes Hana cry. Hopefully we can get this worked out tomorrow with our case manager at Kaiser. Maybe it is just a matter of getting a different type of NG tube.