In a way, I'm glad that we held off - not simply from a health standpoint for her, but from a personal standpoint. Now, I am less nervous. Now, I feel really ready.
I am looking ahead, and I am feeling hopeful. The thoughts of the stress of this experience and the intense adjustment that this is going to bring for all of us are being trumped by the thoughts of Brenna eating. Thoughts of us eating together as a family. Thoughts of us traveling this summer without coolers full of blended foods. Thoughts of Brenna wearing adorable clothes that don't have snaps for access to her tummy. In fact, I even went out and bought a couple of sleepers that zip up and outfits that tuck in, to celebrate.
Today brings a culmination of all of those thoughts of both stress and celebration to the surface. Today is the first day of…
Brenna's Big Tube Wean
Brenna has been pretty much tube-dependent since her g-tube surgery in August 2012. Everyone always asks why she doesn't eat. And I wish we knew. My theory is that it all started because she has dairy intolerances that we didn't really know about at that time, and it was making her feel sick so she didn't want to eat. She also may have had terrible reflux or become averse to the taste of the medicines she was taking. Who knows. Eventually, we had to have the g-tube placed…and that brought on a lot more vomiting as we struggled with the amount to give her and how fast and what formula her tummy would tolerate.
And who wants to eat when they're throwing up?
Then eventually, she lost those eating skills, and she lost interest in eating because she has been so stuffed full every day from the tube. At this point, she doesn't really know that taking bites, chewing and swallowing are something you do to relieve the feeling of hunger. I think right now she just likes the way things taste. When she feels hungry, she points to her tube, like "fill me up, Mommy!"
But today, that's changing. Everyone keeps noting that we can always go back if this wean isn't successful - which I fully realize - but I don't want to go back. I want this to be the beginning of oral eating that just continues to get better until she is eating everything herself that her body needs. I want to tell George the Feeding Pump that he's been a reliable gentleman during this process, but he's no longer welcome around here.
And so today, we cut back on her tube feeds, to make her feel hungry and therefore to make her eat.
Brenna had been getting three feedings of blended food at mealtimes (we blend up meat, bread, fruits, veggies, oil, etc. to give through her tube), and 3 feedings of formula while she sleeps (morning, nap and night.) She loves to taste foods, and she has a lot of interest in eating, which is a great starting point.
Starting today, she is being allowed to wake up hungry. After attempts at eating breakfast, we will feed her half of her normal morning amount through her tube. Then she won't get another tube feeding until after dinner…so her tube meals are being cut in half, and she'll be able to feel hungry almost all day.
For a child who has only taken about 15 bites of food at a time by mouth, this is going to be an enormous adjustment. She will be really cranky, she will be tired, and we're closely monitoring her for hydration and for weight loss. We have a weight loss limit that I pray we don't see too quickly in this process because the girl can lose weight like nobody's business.
We've been stocking up on snacks and preparing Brenna-friendly dishes. She loves meats, so I have sausage and taco meat at the ready, pizza is on hand of course (her favorite), and I made her favorite bolognese sauce too. And we've got some dairy-free foods to try out too, because we're still hesitant to give her much dairy (she's only had some bites of foods with dairy products in them, like cheese, and tolerated those well).
To be honest, I have no idea how she's ever going to eat enough to grow on her own, because the amount of food/calories she takes in is almost unbelievable... But then I look around at these other children with HI, and they're doing it. They're eating and drinking like crazy…and so I try to have faith. And the beauty of already having the g-tube means that we can supplement as needed to ensure she continues to grow and stay hydrated and take medicine.
Prayers are appreciated… prayers that the transition from tube-feeding to eating orally goes as smoothly and successfully as possible. I know you'll be rooting us on and celebrating each bite with us. This week has the potential to be a rough one in our house, for everyone. I have some posts already planned that share some other things that have been on my heart lately, and hopefully I'll also get several chances to update about The Big Tube Wean.
And I'm hoping that very soon I will be able to show you photos of Brenna with food all over her face after a big meal! :)