Hana continues to do well. I’m starting to feel better myself. Right now, Hana seems to be getting three teeth at once and one of them is a molar so there is quite a bit of fussiness. She is only allowed to get Tylenol to help with the teething. Today she also had more bloodwork and hopefully we are getting on a more normal routine although one of her levels came back high so they may have to repeat one test tomorrow. They did decide to test her BNP level, which is a measurement of heart failure (although not a very reliable test in children). Hana’s was 388 which is the lowest it has ever been since we discovered her heart condition.

I would love to get out more, but it has still been difficult to find the time between napping after very poor sleep, eating and pumping. Also, someone really needs to be in the room with Hana all the time so it is hard to ask a nurse, especially when they are busy, but I do otherwise I would never get a chance to run to the kitchen for food!

I am trying to create a really healthy environment for a budding toddler. It is very challenging! There is only so much we can do and only so many places we can go so we have to really get creative to make the most of it. I bought reusable stickers to put on the windows both in our room or to take with us on “walks” to change up the routine. I have bubbles to blow outside and balls to throw in the fountain. I think I’m going to try “scavenger hunts” by putting temporary stickers from our favorite books up on the walls in the unit and going around to identify them. Hana is not doing crafts or coloring yet and she is not allowed to go to the playroom. I am rotating through the toys so that they seem “new”. If you have any ideas, please let me know! She LOVES to watch other kids. She loves to be outside too, but that is limited, especially when it rains.

Today the grandmother of one of the babies that was in the group room in the CVICU with us stopped me. Sometimes she does not make a lot of sense and I’m not sure why. Her daughter doesn’t always make sense to me either. She has been living in the hospital since the end of July when her daughter, Promise, was born with Hypoplastic Left Heart Syndrome. Promise has not been doing too well lately. Today, the grandmother told me that Promise passed away this morning. I was very, very sorry to hear this. I hope I understood her correctly this time because I was a little puzzled as to why she was still at the hospital at 5:30 pm but I have no idea what happens after a child dies in the hospital. I hope sweet Promise can now rest in peace.


2 thoughts on “Promise

  1. During my work as a PreK special ed teacher I used shoeboxes to separate the toys and to keep them “fresh”. Some boxes were themed and some were random. Putting them away and bringing them out was part of the fun. Can Hana use dough or clay? A ‘platform’ of dough or clay makes a good platform to place little animals or pegs and make a scenario that can be changed and added to . Even the putting away is fun. Hope you all are sleeping soundly as I write this !


  2. Puppets are always fun. Doing puppet shows, letting her try. My daughters try to eat things with the puppets which is hilariously funny.

    Best of luck to you and your family!


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