Persistence and Faith

Persistence is the word of the year. Or lifetime? I don’t know, but it’s a word I’m hanging onto right now.

At the beginning of July 2016, we visited with River’s GI, Dr. P, and we all made the decision together to start another wean. We had been working really hard for a long time to get a good healthy weight onto her, and it was finally showing. She had “skyrocketed” up to about the 13th percentile, after hanging out at the 10th for many years. The 10th percentile is her norm, and it’s not concerning for her to be at the 10th, so going up to the 13th may or may not be her norm, but we had some good wiggle room!

We are now in the 4th month of this trial wean. I still consider it a trial because we just never know when it’s going to be time to bring it to end and go back to tube feedings. In the midst of these last four months I’ve seen her weight continually and gradually go down, and it’s heartbreaking and difficult to see. Everyday I fret over her food, try and add sneaky extra calories to anything she eats if possible. She’s on a large amount of grains and dairy and fat, which is also very frustrating and disheartening. But it’s what she likes, will eat, and is high in calories. Not too mention the sugar! She gets stuff like ice cream almost everyday.

It feels counterintuitive, and it feels just plain wrong at times. Especially as I stand by, eat my vegetables and quinoa, as she either goes to town or picks disdainfully at her creamy food. I’m a vegetarian, and she likes meat. The RD wants me to give her more meat! River likes things likes ham and bacon. They say it adds calories and iron. Some days I feel like everything I do for her is just wrong. Like I’m failing her over and over again. It goes against my beliefs about food and nutrition. It goes against everything I’ve been taught about healthy eating. I’m bombarded daily with information. Don’t eat meat, don’t eat dairy, do eat vegan proteins, do eat all the vegetables except the starchy ones, do eat clean, do eat organic, don’t eat saturated fats, do eat unsaturated fats, get vitamins from your food not from supplements, don’t forget your probiotics, etc… I have a very “hate” relationship with food, let’s just put it that way. I’m sure many tubie parents out there could agree to that sentiment. Feeding therapy, registered dietitians, everyone and their dog’s advice, and just cultural and popular beliefs about food, will completely run you amok till you don’t know what the hell to do anymore. I have a sense I need to change my relationship with food here.

Some days she eats like a champ! So what do we do? We usually try and replicate the same foods the next day, or spend gobs of money on those things and try to feed them to her again, all the time. It backfires generally. One day she inhales alfredo, the next day picks at it. One day asks for and inhales peanut butter with apples, the next day acts as if that was never something she liked! Ok ok, that’s probably a typical 6 year old kid thing. But it really messes with her weight progress. It changes day to day what she is willing to eat, and how much.

This, and her insomnia, finally drove us to a child psychologist. So we struggle most days with her eating. We struggle just as hard with her sleeping. Her sleep, as it’s always been, has been nothing less than torturous for us parents. I was spending hours in the evening to get her to sleep, then I’d go right to bed after her, to always be awoken in the middle of the night, every single night. (Side note: If I don’t wake up ass early in the morning I never get a minute of the day without my kids, so I suggest, even if it’s hard, wake up early to escape your kidlets even if it’s just for a little bit.) Not to mention my poor husband who has to get up even earlier than me to go to work. He’s basically a zombie and coffee addict. He, unfortunately, cannot sleep through any of this, and has some level of insomnia himself.

So onto the psychologist. Who is wonderful btw!! I can’t believe we hadn’t seen one sooner. Like really. Go see one if you think it’ll help your family and your kiddo’s progress. Anyway he gave us basically two plans to start with. A new bedtime routine, and an eating routine.

Sleeping plan goes like this: it’s called the “Check-in” method or something. You take your kiddo to bed, at a set time, every night. You put them to bed in a short simple manner, for us that’s one book downstairs with everyone, one book upstairs in bed, then a short and sweet back rub or quick kid’s meditation(with some Reiki from me as well). Also part of the plan, Dad must participate, according to the doc, we had to get her off her reliance on me, and bring Dad back into the mix. He puts her to bed several nights a week. Then the crucial part: you do the check-ins at regular, reliable intervals. We started with 2-3 minutes when she was frantic, when she was relaxed 5-6 minutes. At first sometimes we had to hover just on the stairs to her bedroom because she would scream and cry and try to come downstairs. So we would have to go right in, soothe her, and try to leave as quick as we could. I had to keep a log of this, every night, to see our progress. The first week was hell, not gonna lie. She screamed and cried and fought this hard. She rarely left her room, but would try and make a huge racket to get us back in.The Doc said totally normal to experience this. We try and be as “peaceful parenting” as possible, and this was hard for all of us. We just had to reassure her and show her we were sticking with the plan. We constantly praised her if she was remaining calm during those times. We did no rewards or sticker charts or anything, those methods have never worked for her. After about 5 days she began getting it. She started calming down and patiently waiting for us during check ins. Check-ins have to be a max. of 1 minute.

My vision board for bedtime!

We’ve been going at this over a month now. We’ve managed to progress with her participation. She “participates”. She waits calmly, and is learning to fall asleep without our presence in the room. BUT we still haven’t succeeded in it translating to truly know how to fall asleep. She still takes an hour most nights to finally fall asleep. With me or my hubby walking our aching knees up and down the stairs, back and forth, back and forth. The doc told us “studies show” that this is successful when the child can drift off to sleep within 10-20 minutes of being “put to bed”. Well I’ll believe it when I see it. I’m almost at tearing my hair out stage with this. But this is still better than what we were doing before….sacrificing my sanity and self by laying with her for that long hour and coaxing her to sleep. Now my son and I watch Doctor Who during this hour, and I just miss out on bits and pieces during my check-ins!! Much better! But still frustrating because I feel as if I’ve been trying to teach her to sleep for 6.5 years. SOOOOO the clincher on this is that it’s supposed to translate to the middle of the night insomnia, and it hasn’t and it won’t, until we reach that 10-20 minute drift off after bedtime milestone. We still all suffer from River’s insomnia. The insomnia is “supposed” to get better when she truly learns to fall asleep on her own. When will that happen?????????? I can’t wait for us all to have a new joyful relationship with sleep here.

Examples of my logs

Eating plan: a strict every two hours of eating, no snacking in between. So we start at 10 am and go every two hours with food. Snack or meal. Just every two hours. When we’ve followed this she does eat more in a day. I also charted this for 3 weeks to see it work or not work. It seemed to prove very useful. He also gave us a bunch of other suggestions about letting her choose her portions, not overwhelming her with large portions – wait for her to ask for more, and helping her listen to her body signals especially if she asks for food between times, and we tell her she must wait to eat, hoping for her to build her hunger. This is all generally to get her more responsive and knowledgable about her hunger signals. Sticking to this strict schedule has proven to be difficult. I try and bring snacks when we leave the house and only feed her at the right times. Some days get completely out of hand and the schedule gets lost. When this happens I can see how she doesn’t get enough to eat and how it isn’t helping her hunger signals. Which means I have to be a rigid strict mama when it comes to eating times, and I’m not, being rigid goes against my nature, so it’s a work in progress. Persistence. Everything about this goes against my nature. I have bend and shape myself in order to help my daughter. Again persistence.

Three more weeks and we will be seeing the RD for a check up on the wean. Currently River has reached the 10th percentile (again where she use to live before the 13th), the team was comfortable pursuing the wean because perhaps River’s normal is the 10th. But if we start hitting below that we will be reintroducing some blenderized tube feedings.

These have all been huge and momentous changes in River’s little life. We are all pushing hard to get her grow up. Sometimes I wonder if this is a good thing, or if this is the right time. I trust that it’s the right time for it, but I falter when it comes to seeing her weight decline.

So to end this update: Be positive and have faith(note to self), (insert screaming emoji here) and (insert happy thumbs up emoji with the word “Persistence”).

So it goes, so we continue on. So it is.