I’ve been too tired to write updates! I’ve been falling asleep while breast pumping, something I didn’t think was possible. But there has been a lot going on.
First, Hana saw the GI doctor and dietitian. From that they decided she should start on some pediatric formula since her nutritional needs have outgrown the infant formula now that she is over a year old. We also scheduled some weight checks. A few days later six cases of Pediasure arrived. This stuff smells disgusting. It is made to be very sweet so that it entices kids to drink it, but it really turns my stomach. I slowly started adding it to Hana’s feeds, mixed with the regular fortified breast milk. I started with 25% and a couple days later went to 30% and a couple days later up to 35%. That’s when Hana started vomiting.
I ordered a can of an alternative to Pediasure, called Pediasmart. It only comes in powdered form, whereas Pediasure comes as a canned liquid (it also comes in a powder). I swapped out the Pediasure for Pediasmart and the vomiting stopped. Then we had to scramble to find more, this stuff is not easy to find in a retail store! We eventually ran out of Pediasmart so I substituted Pediasure back in for one night and she vomited alot, so that’s the end of me attempting to give Hana Pediasure. The next day (Monday) our amazing GI nurse proactively anticipated that we would run out of the formula before the supply she ordered for us arrived. She called all over the city trying to find some, talked to colleagues and the Pediasmart rep and she dug up a can of chocolate Pediasmart for us!
Hana had a weight check on the same scale as her last weight check and she gained 130 grams over 18 days. That’s 7 grams a day, which I think is pretty okay. They did say that kids’ weight gain generally slows to 3 or 4 grams a day after they turn a year.
Feeding by mouth has been going terrible. I should say, there has been no progress whatsoever. Our feeding specialist talked about getting Hana into a feeding program, one where they come to the house. At first I was excited but then I wasn’t sure if I liked the idea. I’ve heard mixed things about the feeding program that we would be referred to. I’ve been thinking about this feeding stuff a lot. It consumes my brain power. After much deliberation I decided that I think Hana just needs more time. I feel pretty confident about that. I think her brain is at work figuring out the world (including learning to walk) and even though we don’t see progress in her eating, I think things are at work inside her head.
Of course, I still want to give her opportunities to show us she can eat and drink, but I can’t be stressed about it. Or anxious. Or have expectations. She will do it when she is ready. So, I plug along, packing snacks and milk for her milk bear. I’ve mostly given up trying to have her “eat” while sitting in her high chair. I try offering food while we are out and about – at the park, in the stroller, at the playground. But mostly she is not interested, or she just wants to throw it on the floor.
Then on Sunday it got really hot in San Francisco. It was over 90 degrees! I made sure to offer Hana lots of cold breast milk. She drank and drank. She drank 380 mL, that’s almost 13 ounces. Then she did it the next day too! The day after that it cooled back down to our normal 65 degree weather and she drank 300 mL (10 ounces). The next day I tried adding some Pediasmart to the milk and her drinking slowed significantly, but she still drank more than 180 mL (6 ounces) which is more than she has consistently been drinking. I went back to straight breast milk the next day and she drank 290 mL and then 360 mL yesterday. I know that eventually she needs to eat or drink something more high calorie, but for now I want to see if she will consistently drink that volume.
At our feeding appointment this past week we went at a new time – in the morning, versus lunchtime. Hana “ate” a lot more yogurt than she has lately. She also tried some apple flavored crunchy snacks. She did this for an hour before she wanted to be done. It was great progress! Some things to note – she is perhaps still experiencing some reflux, she seems to be constipated and gassy from the new pediatric formula and she drank some milk so fast that she threw up. I think its because some went down the wrong tube and she coughed and threw up rather than her stomach bothering her. But either way our feeding specialist is going to discuss all these issues with the GI doctor and dietitian.
We have been getting out a lot more. I think it is good for Hana to be out, she seems to really thrive when she does. Its actually quite amazing. We go to the California Academy of Sciences every Tuesday morning. We go to the pool once a week and music class twice a week (to help stimulate her speech development). We go to the playground almost every day and she watches the other kids and climbs things. She loves to climb!
Recently Hana was mentioned in an online article about rare diseases for Children’s Cardiomyopathy Awareness Month (which is September):
https://rarediseases.org/hope-for-kids-with-heart-disease-september-is-childrens-cardiomyopathy-awareness-month/
Hana turned 13-months on Saturday and she also took her first steps! I’m hoping that once she really starts to walk that she will want to shift her focus more on learning to really eat.
There is nothing new to report about her heart. She wore an EKG holter for 24 hours which they said she would need to do twice a year. Everything came back normal. When she takes a long nap, two hours or more (she has never napped longer than 2 hours and fifteen minutes except in the days right before she ended up in the hospital) I get anxious. Yesterday was one of those days. Is she napping so long because of her heart? I can spiral out of control very quickly. I’ve been working on some things to help ease that anxiety. Hana does not need anxious vibes right now (or ever, really). She needs good vibes! Calm, relaxed, nurturing, positive vibes. We hung up a homemade tree in the house for Hana’s birthday party. It is still up! We cut out dozens and dozens of paper leaves for the tree and asked people to write well wishes (or bring their own “leaf” to add to the tree) for Hana. I’ve been starting to add my own good vibe, well wishes to the tree. It is a good practice for calming my anxiety!
If anyone would like to add a leaf to the tree, let me know. I can send you a leaf or you can make your own and send it!
Hana's Heart 