When Hana was in the hospital last week, they had her on fluids to help keep her hydrated without throwing up. Then they transitioned to breast milk and finally they started adding formula to the breast milk so that they were back to her normal calorie count for the day. Now when they did this (and they advised me to restart her pediatric formula mixed in at home the next day!), I was still feeling sick from the stomach flu and hardly eating, so I couldn’t imagine that Hana was feeling ready to handle her normal calorie count for the day either. Hana started vomiting more too so it seemed like we were going backwards instead of forward.
When we got home from the hospital, I stopped giving her formula and went back to straight breast milk. She still vomited some, but it was less and she seemed less miserable. A few days later, when things seemed to be going better, I started adding a little infant formula back in. We still offered Hana straight breast milk by mouth, as much as she wanted to drink and all her tube feeds had some formula added. But Hana was suddenly thirsty. She had been thirsty in the hospital from being dehydrated, but now she was continuing to drink and drink more than her normal amount. Then she started wanting to taste the foods that we were eating.
Its as if the stomach virus and the cut in calories has awakened her appetite! Yesterday, she drank 510 mL of breast milk. The best she has ever done before that was 380 mL. Today she drank 490 mL! Her cardiologist at Stanford says that when she starts regularly drinking 400 mL a day then we can talk about weaning her off her NG tube! In addition to all the breast milk she’s been drinking she’s been gnawing on Cheddar Bunnies, strawberries, cheese, meatballs, noodles, cheese puffs, pizza, yogurt and croutons. She is tasting other things as well. I just can’t believe it! It has helped having extra people around to make it a fun game of tasting and eating (I guess I’m not fun enough). Maybe the greatest thing of all is that Hana seems to be enjoying it!
Perhaps another factor in this new eating success is that Hana has just gotten her first molar. Getting these teeth looks painful and Hana has certainly been acting like they are painful. Despite giving her Tylenol she has had a hard time getting to sleep for bedtime or her nap. But now she has one that has come completely through (and at least another one working its way out). I suspect that now Hana is very overtired because she won’t nap and its taking almost two extra hours to get her to bed at night. Yesterday she napped for only ten minutes all day long. Today she only napped for a little over an hour and that’s been pretty typical this week (and this is not typical of her, more like at least two hours.)
I hope this is the beginning of our breakthrough! We just need her to eat more volume. In the meantime we need to keep an eye on her weight. Eventually she will need to take her medications by mouth too.
Lastly, in the good news department, Hana saw her pediatric ophthalmologist who said her astigmatism is so in consequential now that we no longer have to make her wear they eye patch! This is a huge deal because finding time to sit there for an hour, holding Hana’s hands down to make sure she didn’t pull the eye patch off, was very difficult.