Finally! Yes an update has come! I’ve been so busy lately, it’s hard to get 5 minutes!
River has just completed 3 weeks on Periactin. She had the first week at half dose, then 2 weeks at full dose. She’s been off it for several days now. There was definitely a difference when we started it, we could tell right away that her appetite went up. The last 3 weeks have been at least double in her oral eating! She seems to be loving food right now! It’s been incredible. It’s hard to say how much of that is Periactin though? We really don’t know, but it certainly occurred at the same time as starting the drug. She is just starting her week off rotation, and they said to keep an eye out for a decrease in appetite. So far I don’t think I’ve seen her decrease. We are still waiting to discover how much we can say it was the drug or not. Only time will tell.
I haven’t weighed her since her last weigh-in at the clinic, but I believe it’s safe to say she’s having a nice slow increase, my arms hurt more when I carry her around! Her chub is beginning to return to her thighs too. It never fully left, but the fluffiness is more noticeable. It’s been nearly 3 full months since we started the wean, and I think we are safe to say that we have a 50/50 tubie baby! She is no longer 100% tube-fed and I feel extremely happy and relieved with this number! Three months later and something significant has occurred. Also my high-tension and erratic emotions linked to it has begun to wane as well. I feel we’ve gotten into a nice rhythm of tube feedings. She get’s 3 boluses a day directly following a meal, and we give her around 250ml-300ml in fluids at night. Her fluid intake is still on the poor side, she doesn’t really hydrate herself, and if anything, that’s what the tube feedings are for, and why not throw in calories as well? If I see her reach her weight growth curb again I will know we are in the neutral zone and we won’t need to do anything more than keep her on that curb. I feel that in the near future, when everyone is happy with her weight and growth again that we can try another attempt at full weaning.
And thank goodness for our upcoming consult at Seattle Children’s’ to help us work on all of that! We have an appointment set with their Feeding and Growth team, in April! They have a rapid wean program there, which we are going to determine if River is a candidate for, and what all that means. Her current feeding therapist, Jennifer, is very pleased and excited about River’s new oral skills and has seen huge improvements, a different baby she says! So I think having some extra feedback and strategies from Children’s should be very useful.
And in other tubie news, we’ve stopped her blenderized diet indefinitely! And although it was such a good thing, it’s a lot of work! I believe in it whole-heartedly and would recommend it to any other. But since River is getting a diverse selection of food she is eating herself, we’ve been supplementing with Pediasmart for the other portion of her daily calories, or whole milk when I don’t have any mixed up. It’s about 30 calories per ounce, and we also put a little in her night bottle so she can get a taste, and maybe one day be willing to drink it straight!
And in heart baby news: I’m very excited to announce that in Spring quarter, starting in April I am launching into a self-directed project at school that will focus on congenital heart defects. I get to work directly with River’s cardiologist for one portion, I’m going to illustrate River’s heart (pre and post-op). I’m thrilled that I get to do something like this that I’m so passionate about, and hopefully it will teach me a lot, as well as the ability to spread awareness to others through art.