Wean Day 4 started similarly to the previous 3. Reide had her 7:30am feed, which by the written Wean Plan would be her last for the day. We had a doctors appointment at 8:30a which revealed she has fluid on her right ear and needs to see PT for her torticollis. Aka: nothing the doctor nor I am immediately concerned about. Oh and her stoma (which used to be beautiful but has been nasty since her last button change) is "fine" and we shouldn't do anything to it. Easy enough.
So Reide's oral attempts today were much better than yesterday. Again, she tasted EVERYTHING and today, actually swallowed some. At lunch and dinner, she swallowed about 10-15 pieces of Mac-n-cheese, ate about 10 Yogurt Melts and about 10 Gerber Crunchies over the course of the afternoon-evening. She drank very little of anything. If I had to estimate, I'd say she drank about 3 oz combined between my drinks and her multiple cups that are scattered everywhere. At dinner when it took her over 20 minutes of squirming in the highchair to settle down and take the first bite of mac-n-cheese, I told her the story my dad used to tell us when we didn't want our food....it was a joke, really. But he used to tell us that "even the starving children in Africa would eat this" and that we should be ashamed of ourselves for wasting so much food. The story did no good. She threw her sippy cup at me and looked at me like I was crazy. Oh well, I tried. It didn't work on us as kids either, so maybe the starving kids story should just be forgotten now.
All in all, Reide didn't eat enough or drink enough today to keep a bird alive. Dark circles are starting to show under her eyes and her energy level (although still exhaustingly high) is obviously declining. For these reasons we will continue to give her 10pm feed to her although the plan called for it to be nixed tonight. We will also continue 8+oz of pedialyte over the night to keep her safely hydrated. Brock and I have decided that if Reide's eating doesn't pick up significantly tomorrow that we'll switch appetite stimulant medications, from Periactin to Megace. Periactin, we've used before with no real success but the GI wanted us to start there. The Megace isn't typically used in children, least of all a 13month old, but is typically used in cancer patients who have lost their appetite bc of chemo, etc. But we'll switch meds if tomorrows eating merits a change.
Brock will be home alone with Reide tomorrow and I'll be at work. So pray for Brock, pray for Reide to eat and pray for me not to go crazy not having complete control over it all! (When am I going to learn?) Amazingly, Reide's demeanor remains pretty good. She's getting a little clingier and as I said her energy level is declining, but overall, she's doing really well with her mood. It's astonishing how very little food she's had over the last 48 hours and yet she continues to be our smiley, happy, energetic baby. God is good, all the time.
Please keep sending your positive thoughts and prayers our way!
Until tomorrow night, Good night!
Good luck with the Wean!
ReplyDeleteI weaned my daughter from the tube with Netcoaching with Graz. My daughter was hardly eating at first. One day she did not eat anything until 3 pm, that day she had a couple of sips of milk and some bites of chocolate.
For the first couple of months after cutting all tube feeds I had my daughter surrounded by food and drinks. I made sure she always had food available to her at her level. I also had her sit down at her highchair while I was eating breakfast, lunch, and dinner. I had all sorts of foods available (lots of junk food and sweets at the beginning) and also did the play picnics. It just took a lot of patience to let her explore food, increase her oral skills, and let go of the control. Still 9 months after not using the tube, it seems like she lives on air since she eats very little, but I trust that she is eating what her body requires. She eats everything except vegetables (but mostly carbs and meats and will sometimes surprise me by taking a bite of broccoli or cauliflower)
There is a blog that helped me a lot during the wean: www.franklyfrankie.com It was very hard for me to let go of the control and accept that my daughter decides when / what / how much to eat, my only job is to offer her food!
If you need support please email me at pachecosylvia@yahoo.de
Leslie,
ReplyDeleteI just saw your comment on my blog. Stay STRONG! Have faith, endless patience, believe in the process, and trust Reide. Tube weaning is one of the most challenging experiences that you will go through as a parent. It is at once heart-breaking, frustrating, terrifying, amazing, and above all (eventually) life changing. I am happy to share more about Francesca's story and where we are today (almost a year later!). I know that having another mother who has been through something similar is invaluable. Feel free to contact me at schnebbl@yahoo.com or 208-921-5300. Call any time. I remember those moments where I was filled with nothing but fear and frustration and it is so incredible to have someone to remind you that there is hope and whatever gagging, retching, puking, throwing, tantruming, non-eating stage your child is in will be temporary. You can do it and so can your sweet Reide.
Sending strength your way!
Brett
www.franklyfrankie.com