A Sweet Loss

Hana continues to do really well. We are amazed and incredibly grateful everyday. She has a new sign to add to her vocabulary almost every day. She is getting sturdier and faster on her feet. She is getting better at independent play. Her drinking of breast milk has plateaued and so I have cut down on pumping once again, since there is no reason to be freezing more breast milk. We have enough to get Hana through sickness, if she were to get sick again like she was last October.

I ask myself how much longer I will pump and there seems to be much debate in this country on how long it is appropriate for kids to get breast milk. The World Health Organization says two years but I don’t know about six more months of exclusive pumping. But, until Hana will reliably drink something else, I guess I’ll keep pumping. She is starting to get interested in cow milk.

This week Hana will get IVIG therapy again. Let’s please hope it works! We heard more about the other options to lower her antibodies and they aren’t desirable. They involve plasmapheresis and medications used to treat cancer (although in a much smaller dose). Hana would have to go down to the pediatric ICU during treatment. She would have to get a central line.

Tonight, though, what is heavy on our minds and hearts is the news of another child, sweet Charlotte, who passed away on Sunday. We met her parents when Hana was in the CVICU. Charlotte was our next door neighbor here on 3 West. She was her parents only child and she was a couple months older than Hana. She was a sweet baby girl. I don’t know what else to say, but my heart is aching.

Thank you to everyone for all your support.

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104 days in the hospital, 85 days post-Berlin Heart, 77 days on the transplant list.

5 thoughts on “A Sweet Loss

  1. So sorry about baby Charlotte. So sad for her parents. So happy Hana is continuing to do ok. I hope the new procedure goes well so she will not have to do the alternative. Everyday she is in my prayers. You and Paul are amazing parents.

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  2. So sorry about Charlotte that must be difficult to deal with day after day. Where did Hana get her reusable face mask from? it is very cool! I wonder if they make them for adults? Does she need any art supplies (I can run over to Blick in Berkeley) or do you need anything? If she doesn’t like cow’s milk how about goat’s? Meyenburg (I think that is how it is spelled) has it in the condensed form. It is from Happy California Goats. She may go for that. So happy to see she likes the trike. She has improved so much on the Berlin Heart – what an amazing device they made for mankind.

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  3. So sad about Baby Charlotte. My prayers are with her parents today. Hana looks great! (besides being the cutest kid there is!) Don’t get too used to teaching her to ride that trike! Next week it’ll be a two wheeled bike and the week after that a car!

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  4. captions for the photos.
    Top one . ” hey, Dad better buy me a pick up truck, this trike is fun but I’m going to need a pick up truck for the pink box” second: “Ok I finished that, what can you put in front of me now?” third: “put me back in that tub! it’s over there!” forth: “I’m not so sure about tis walking thing!” fifth: “Mom! help me- dad is getting a little too scary” sixth: “Humm – I wonder what mischief I can get into?” and the last on: ” I wonder where I put that puzzle piece?”

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