A few weeks ago the dietician at Kaiser wanted to change Hana’s feeding plan. This has caused a professional “conflict” between Kaiser and Stanford. At Stanford, they want to really move us towards getting Hana’s NG tube out and they try to accomplish this by reducing the number of calories that she gets in hopes that she will feel hungry and start to eat. At Kaiser or perhaps more with the dietician than anyone, they want to make sure Hana is getting adequate nutrition during this important period of her development. Of course, they would also like to see the NG tube go at some point but they would go about getting rid of it by reducing the volume of liquid she gets, while increasing the fortification of the breast milk she gets.
My default is to do what Stanford says to do. So, since the dietician was not returning the calls of the nurse practitioner at Stanford that very, very closely follows Hana’s care, I defaulted to what the nurse practitioner said and did not make the changes the dietician wanted. Let me wrap up this long back and forth story to say that, in the end, we are keeping Hana’s volume of milk at 800 mL and increasing the fortification to 30 kcal/oz. BUT, I am offering her straight breast milk first by mouth and whatever she does not drink I fortify and then run that through the feeding tube. Eventually, Hana will have to drink the fortified milk or start eating food! In addition, she is getting five feeds a day. A smaller 80 mL feed in the morning and then five 130 mL feeds that run over and hour and spread three hours apart. Three of those tend to be while she is sleeping – one while she is taking a nap and two after she has gone to bed. The best thing about these changes is that she getting fed a lot less at night. No more overnight continuous feeds and no more around the clock 3am or 6am feeds. I do have to do a midnight to 1am feed, but that’s manageable. Hana sleeps much better too!
I started this “experiment” kind of own my own on Monday. I got the “blessing” to do it after the fact. I figured one or two days was not going to harm Hana. On Monday Hana drank 9.6 ounces over the course of the day. The most she has drank before that was less than 5 ounces! Today, Hana drank 11 ounces! Overall she gets 26.6 ounces a day, so she’s not quite at half yet. She has drank all of it through her “Milk Bear”.
In the meantime, I am really trying to get her to become more interested in solid foods! We’ve sat and watched a couple of babies eat in the last few days and it has not really enticed her to eat more than a very small amount on a spoon. I’m working on setting up food play as much as possible during the day. Today I set up a sheet in one room with the inflatable kiddie pool and all kinds of food. I’ve bought some new tools too and I’ve stopped really trying to feed her. Instead I encourage her to try eating herself. I think she really took to drinking from the Milk Bear because she could control it herself, maybe it will be the same with foods.
Tomorrow we are going to take her NG tube out in the morning after her morning meds. Now we know she can go a good amount of the days drinking the milk she needs so it doesn’t seem as risky to take out the tube. There is only one medication that she absolutely needs to get in the afternoon that will be tricky to give without the tube. I gave Hana Tylenol for teething several times before she was ever in the hospital, but now her gag reflex is so strong, I hope she doesn’t vomit. Who knows? Maybe it will go great and she will drink so much milk and take all her meds by mouth that we won’t need to put the tube back in? That would be a small miracle!
Hana's Heart 