We recently made some changes for Hana. We decreased the volume of fortified milk that she gets during the night from 480 mL to 360 mL. It now runs until about 5 a.m. Since doing this she has thrown up less during the early morning. We also changed the formula used to fortify her breast milk. Before she was getting Pregestimil. Now, we are trying out Similac Advance. So far, it seems a lot more palatable (to me) but it is still being fed to her through the NG tube. Lastly, she is getting the higher dose of more concentrated Carvedilol, which she seems to be tolerating just fine.

In other news, Hana is refusing the bottle more than ever before. The bottle I thought might be our answer repulses Hana. All other bottles are just as bad. This is so incredibly frustrating for me. I often feel like a bad mom, that somehow this is my doing. I just don’t know what else to do. The introduction of solid foods seems to be going okay, but I somehow feel she should be more interested, so maybe I am doing something wrong there. I don’t know how many more tricks there are to work with.

Lastly, I am trying to get out more with Hana. She loves being outside so much that I feel it is important. I do feel guilty taking the time to enjoy myself and be outside taking walks with her. I feel guilty because people are giving up their free time to come over and help do chores. I feel like I should just be doing chores too and it is not fair to them for me to have “free time” while they are giving up theirs to help me. But I think I probably need to let that go.



2 thoughts on “Update

  1. Yes, just enjoy your outside time. I’m confident the people that are helping you are not sitting there thinking that they are being taken advantage of. They are helping so that you can have some time to enjoy Hana and the fresh air is healthy for both of you! Stop the guilt and just enjoy the present! (sooo easy for me to say since I’m not the one going through it! But you would give the same advice!) love you all!

    Liked by 1 person

  2. Hana looks so alert! Probably the only one in the family who is, but it’s so encouraging to see her spunk and interest in her surroundings. Blessings.

    Liked by 1 person

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