It’s been really… really hard. We have successfully changed over Gabi’s formula to a new higher calorie, higher fat one called Pediasure 1.5. I think she has put on weight already, so I know it’s good for her and it’s all going to be worth it. But getting her off of night time feeds is going to be really difficult.
We are on step 2 of the list. She is hooked up to a feeding pump 5 times a day for an hour each time. That is almost every other hour. AND I am supposed to try and give her some food for her to try to eat orally BEFORE each pump feeding! If I have to go somewhere, and having 5 kids to tote around, I HAVE to go somewhere… all the time. We haven’t found our new groove yet and it’s been tough.
The transition to the new food was tough too. I did some research on how our body responds to higher fatty foods. Basically, because she was on a low fat, low calorie diet for 9 months, her pancreas and gall bladder weren’t doing much work. Now, all of the sudden, they have been boosted up into turbo speed. Everything will adjust, in time. But the past week, she has been crying from discomfort and throwing up a lot… like 3 or 4 times a day. ANd of course, Big Ethan has been out of town. The GI nurse told me to stick it out and sure enough, things are getting better. But we are not at her full feeds yet.
When she is hooked up to her pump, she is confined to a chair or to the table like this. We have been trying to use her Dora backpack and she can carry her pump on her back. So far, she will wear this for a few minutes but it is heavy for her and cumbersome, so she asks to take it off. It is constant.
AND to make things worse, Max, our troublesome 18 month old, is constantly trying to grab at the tubes and play with the buttons. So I have to monitor things ALL THE TIME. Maybe it’s a blessing we have this small house, then I can be more vigilant and hear things from one end of the house to the other. God planned that well.
It’s been a roller coaster of emotions going through these changes. I am so so sad for her. In the midst of all the vomiting and discomfort, she had to miss school and a field trip to a local farm to visit the beloved animals. However- perspective- I know she is only 3, and she will be able to see many farms…
AND then there’s the ignorant comments that are so hurtful. I know most people just don’t and can’t understand. But please don’t try and tell me just to try feeding her certain foods and then she will eat, or don’t try and tell me that the window of overcoming oral aversions closes after toddlerhood. Please don’t look at me and wonder why my almost 4 year old isn’t potty trained…and please don’t tell me that she has come so far and I should be so thrilled and overjoyed… because yes she has come far and yes she is doing well. But she cannot keep up with her peers and she cannot eat and I am trying my hardest to teach her to use the potty and to eat. And I feel like sometimes I’m not doing enough for her and like any other mother when their kids aren’t thriving, naturally, they feel like a failure. It is very lonely. Motherhood is very lonely, but this is amplified by ten thousand.
But I trust in God’s plan for her and I know we’ll get there. I like to document these trying times so that I can look back and remember and validate how far we have come.
The goal is to be at step 5 in 2 weeks. We have to go really slowly…