Just two days after Lydia’s EEG, we went down for a different appointment at Primary’s. We went back to the beginning (this was the first clinic Lydia had an appointment with) and had an appointment at the HEFT Clinic. We met with the same gastroenterologist, speech language pathologist, and dietitian.
The reason for this appointment was because Lydia has been losing weight. It feels especially discouraging because eating was pretty much the one area where I felt like we had improved. Six months ago, Lydia was throwing up (sometimes multiple times a day) and really struggling to keep things down. But now she hardly ever throws up and we have broadened the types of food she can eat (we still have a long ways to go – but she has definitely shown improvement!). But over the last six months she has lost weight and that is just not a trend Lydia can afford.
Last month, Lydia dipped into the 19 pounds range which is not good. We are used to BIG babies and toddlers and so this is really foreign territory for us (to put it into perspective – Jacob was over 20 pounds at 4 months old!). This isn’t the first time Lydia has struggled to gain weight. She was our smallest baby at 6 pounds, but she really didn’t gain much weight at all until three months. We had to do the weekly weigh-ins for awhile but then she seemed to take off after that.
But once she hit that year mark she has definitely plateaued and is now gradually dipping downward. So this was a “how do we help this?” kind of appointment. I chatted with the dietician and speech language pathologist while I fed Lydia a lunch and they watched how she did. Then we talked strategy.
Dietician
As far as nutrition goes, the goal is to ADD calories without adding volume. If you give Lydia more food than she is used to, she throws it up. We’ve tried gradually adding more and we are just struggling to get more into her with positive results. Sooo….here is the plan:
- Adding Docal to her diet. This is basically a powder that has no flavor that you can add to basically anything. Each scoop is 50 calories and the goal is to get her to eat 3-4 scoops each day to boost calories.
- High calorie purees. Lydia can eat some solid foods but she is still mostly on purees only. So we are trying to stick with the most high calorie ones.
- Blending up table foods to try and give denser calories.
- More and more Pediasure.
Speech Language Pathologist
The main goal here is to help Lydia develop the skills she needs to graduate to solid foods which will help her eat more calories. We have a local therapist that has been working on this with Lydia for the last seven months. Lydia really struggles chewing – which is kind of important in eating – and so this really needs to happen. Lydia is very unmotivated to do this and it has been a struggle.
Gastroenterologist
The final piece was meeting with our gastroenterologist. This was where things got particularly discouraging. She told us that Lydia is “on watch” for getting a gastrostomy tube (G-tube). Not good news. She told me that as bad as that may seem, it is very “normal” for kiddos in Lydia’s situation. Which I know was meant to be comforting, but it just wasn’t. I was told that although this isn’t a reason to get a G-tube it is really difficult to maintain this kind of feeding when a caregiver has to be feeding them every time. She also said that the special food she will need on her current diet will get expensive and most insurance will not cover it unless you have a G-tube.
I really do not want to get a G-tube.
I know it may happen. And I may realize that that is what’s best for Lydie. But, geez, I really don’t want to go that route right now. So to say I am highly motivated to get as much food into that little girl, is an understatement. It would be easier if it was just a matter of feeding her more but it is a lot trickier given her circumstances. But I am determined to try!
So, as of right now, Lydia will need to get monthly weigh ins. If they don’t see adequate weight gain, we will have to think about the next step.
Feeding Update
It’s been almost two weeks since that appointment. Mark and I were feeling hopeful about the direction things were going. We both felt like Lydia’s cheeks were filling out (most of her weight is in her cheeks 😊) and felt sure that weight was being gained. However, yesterday we weighed Lydia and she not only hadn’t gained any weight, but she was half a pound lighter than she had been at her appointment. Granted, scales can vary, but it was still discouraging.
So if anyone has any suggestion of food with lots of calories in pureed form beyond ice cream – we will gladly take any them!
