Today we saw the feeding specialist again. This week’s appointment went much better than last week. Hana allowed butternut squash to be smeared on her face and she actually tasted it several times. I still think she would prefer to be more independently driven with the feeding, so I may experiment giving her safe things to taste throughout the day. She also improved with the bottle a bit by allowing the nipple to actually go in her mouth and take a few sucks. We also tried a new cup that the feeding specialist had and Hana seemed to really like it (but she likes everything once, right?). We will continue to try the cup this week.
Later, I had a phone appointment with the dietician. We discussed how Hana did not gain weight over the last week and how she has vomited every morning the last three mornings. It’s been after or during the first bolus feed of the day, which also coincides with her naptime. She usually wakes from her nap to vomit or she vomits right after her nap. Today she had a short nap and then vomited all over the kitchen. But anyway, we decided to increase the amount her breastmilk is fortified from 28kcal/oz to 30kcal/oz. For now we will keep the volume the same. We also discussed some additional foods to try – it seems peaches, mango, prune, cauliflower and potatoes are the ones to try next. Both the dietician and the feeding specialist would like her to try peaches. The dietician would like her to try prunes since we are increasing her formula. If the 30kcal/oz doesn’t add weight, then we will need to increase her volume again. We will do a weight check in one week.
I also talked to one of the nurse practitioners at Stanford. Our usual nurse practitioner is at a conference (along with most of the team of doctors). She called to answer some questions that Paul and I had about the window/timing of listing Hana for a heart transplant. We still have many questions, but I am definitely getting the impression that this is not imminent. I worry though, since her BNP level, which I mentioned before, has continued to rise. I did send a message to Hana’s Kaiser cardiologist, just to get her take on what this means (thanks to Paul who got my Kaiser online account fixed!)
Here are a couple of pictures from the last few days: