I have lots of things to say, but probably no time on Friday morning/afternoon to say them, so I’m saying them now (1 AM).
Well, Damien is starting to say the “ma” syllable, so he’ll very rarely say, “Mamamamama.” He also opens and closes his mouth like he’s talking, but without making noise, so maybe he’s just working his mouth muscles out. He’s eating a lot of vegetables now; today I fed him carrots and later tonight Kim fed him sweet potatoes. He ate most of the carrots for me and ate all of the sweet potatoes from Kim, so he’s definitely a big eater. Very different from her sister, who will only take maybe 1 teaspoon versus the 4 or 5 ounces of baby food that Damien takes.
It’s really hard to say how Liliana is. This whole thing with her formula and throwing up is becoming so difficult. Her feeding schedule is so out of sync, it’s very hard for me to give her all the calories she needs. This morning for example, I gave her a bolus of water between 9 and 10. Since the occupational therapist was scheduled to visit at noon, I didn’t want to make Liliana too full so I gave her half of her regular feeding at 11 AM—100 milliliters, so 100 calories.
Liliana fell asleep after that, so we pushed the appointment to 12:30. When 12:30 came, I managed to wake Liliana up by trying to clean her ears. Liliana didn’t eat anything during the session, but maybe drank very small sips from a new cup the OT brought. As the OT was writing down her suggestions for the week, Liliana went and threw up. I vented her but it didn’t help.
There was absolutely no reason for her to be throwing up, but she seems to be doing it at every feeding, no matter how small the volume is. She sometimes starts gagging at around 45 milliliters, which is slightly more than 1 ounce. That’s like no volume at all!
What makes things worse is that if I can’t fit in her calories during the day, I have to give them to her at night. She sometimes is okay with it, but if it’s past a certain time, she just can’t handle it. That’s why I find her hair matted with formula in the morning and there are yellow stains on her shirt. The new formula should help by decreasing the volume she needs to take, but it’s denser and is a heavier load on her stomach. Hopefully her stomach gets used to it soon.
Some good news is that our medical supply company, Apria, got the correct prescription for Liliana’s formula. The lady that’s been working with us has been super nice, and is sending us a case each of the Peptamen Jr 1.0 and 1.5 for Friday until she can get the approval through insurance.
Liliana’s missed out on a lot of calories today, but I’m afraid of giving her another feeding. She just finished her last feeding of 190 mls, and she had started coughing. She was taking 6.3 ounces over the course of 2 hours. Damien eats that much in 15 minutes without any problems.
Everyone’s saying that she’s growing okay though, and she’s proportionate. I just really want her to be bigger and not have all these problems. We’ll see what her GI doctor says.