My sister Laura was here this past week. It’s been really good to have the extra help, especially when it comes to feeding. Especially when its Laura. She’s an animal whisperer. At least, that’s what I think. Our dog Poppy came from her and I swear she works magic on animals. I think that includes babies.
After our feeding specialist session last week, in which Laura came with me, we decided to focus her week here on getting Hana to eat and drink more. She got to see how the feeding specialist worked and we just took that home and tried to build on those techniques. So, three times a day we tried to get Hana to eat and drink for 20-40 minutes each session. That’s a lot of time and it requires a lot of patience. It also seems to work better with two people. One person entertains Hana and the other person tries to slip food into her mouth.
We’ve discovered that Hana really doesn’t care for anything sweet. That leaves all prepared baby foods pretty much off the table (literally). I made some whipped potatoes and whipped broccoli. I whipped them with greek yogurt – which is Hana’s favorite food. I also whipped up a very small avocado. We alternated between these foods, mostly choosing potatoes and yogurt. Hana will actually grab the spoon of yogurt and put it in her mouth herself, which is really amazing. The others she’s not so crazy about. The more yogurt it has in it the more she likes it.
After trying to get her to eat we try drinking. I bought something called a Mr. Juice Bear which is used for special needs. It looks exactly like a honey bear container except that it has a straw in the lid. You gently squeeze the bear and liquid comes up the straw. We tried it with the feeding specialist first. Hana was ok putting it in her mouth, which was the amazing first step. Then we squeezed breast milk up the straw into her mouth. She didn’t protest, which was also amazing. Throughout the week of trying this we found we didn’t need to squeeze the bear to much, Hana was sucking it up through the straw herself!
It felt like a breakthrough week! It was not without a lot of time and effort. Still, she is only taking about 10-20mL of food and 10-30mL of milk in each session. That’s still less than a tablespoon of food, more like a teaspoon. The milk is an ounce or less. But I am seeing progress, although it is painstakingly slow! I think once Hana can be off the feeding tube life will become a lot easier!
In other news, Hana is speech delayed, so we are trying to also focus on promoting more babbling and making consonant sounds this week. We’ve been working on sign language. I play the Baby Signing Times DVDs for her when I need to keep her still and upright. She loves them! I don’t know what we would do without them but Paul and I are really sick of the songs, but at least we know the signs too. Hana is waving and clapping and the only sign she has made with the DVD so far is “outside”. It was amazing to watch! I also use an iPhone app for additional signs.
I will say a few words about diaper rash. Almost every diaper is a poopy diaper. Is this too much information? This makes it very hard to prevent diaper rash. I should buy stock in Desitin (is that Johnson & Johnson?). Even with a thick layer of maximum strength Desitin and an equally thick layer of Aquaphor, her diaper rash persists! She cries during diaper changes. We finally got a prescription strength cream from the pediatrician, which I think is making the difference. I change her diaper whenever I think she has pooped or every 1.5 to 2 hours. I am hoping that we can eventually go back to cloth diapers! I wish this kid could catch a break! She has so many discomforts.
Tomorrow we have an appointment with the dietician and then later we have to go to Stanford for a clinic visit. Hopefully everyone will be pleased with her weight gain.
This is how we hook up Hana’s feeding pump (in the hanging black backpack) and keep her upright while it is running.
Whipped broccoli face!