Q&A and Riley pics

So in the last week we've had tons and tons of questions about Riley, her care, how she is, what has to be done for her now ect. So, I decided to try and answer them all on our family blog! In searching the internet for pic's of feeding tubes ect., I found it really hard to find them....so we've decided also, to include some pic's of what goes on here....to inform others and give you an idea of what goes on in Riley's life now.


(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)


(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)

Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.

Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.

We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.

I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.

She is tolerating the formula perfectly.

Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.

Riley will likely have the G-tube for 2 yrs.

I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.

She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.

She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.

We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.

The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)