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.
Hana's Heart 
Happy 8 months! Great job with your yogurt! Not sure if the tubes ports are similar to G tube ports but they could just be wearing out and need replaced. Sometimes the kids ports just won’t stay closed. We sometimes out a little medical tape on but usually they still continue to leak. I think the plastic just wears out. Love you all!
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God grants us the ability to accept the things we cannot change, to change the things we can and the wisdom to know the difference. ( I forget who said that)
All we have to do is figure out our priorities in life, which change all the time. Also to recognize that some difficult times we go through are for a reason ( most of the time we don’t know what the reason is until years latter) and hopefully we don’t miss an opportunity to help someone else down the line.
Recognize that the positives may be out numbered by the negatives at times, BUT the positives ALWAYS will out weigh the negatives. And the 1st great big positive is Hana! The next positive is you taking care of her. And the folks that are helping out and those that are praying and those offering encouragement… all positives with heavy weight!
There I go again with the lecture…
Look at Hana in the laundry basket… a happy baby. (adorable too)
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Happy 8 months to Hana! I’m so glad you got a day in with no vomiting… it’s the little things in life that make us happy sometimes, right? Love you, love you, love you.
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