Skip to main content


Showing posts from February, 2015

Baby sister turns 1

The day I left to fly out to Clinical Nutrition Week, my sweet baby Piper turned 1 year old. *sniff sniff* The last year has flown by even faster than I knew it would and it was really hard for me to not be sad about it in the weeks leading up to her birthday. Babies just don't stay babies long enough!

 We had some bumps in the road at the beginning with her but her first year has been a completely different experience for me than the other kids' were. It's hard to un-know the things I've become aware of since Raya was born, and that has made it hard for me to overlook a lot of things with Piper that I probably wouldn't have given a second thought to with the other kids, for better or worse. In some cases, that has been a good thing and in others, it has been the cause of stress and worry for me that I probably didn't need to have.
 Piper is such a sweetheart. She adores her mommy & daddy, and her big sister, Ashtyn. She loves playing with Cole an…

ASPEN Clinical Nutrition Week 2015

This past weekend, I had the privilege of traveling to Long Beach, California to attend ASPEN's Clinical Nutrition Week convention with the Feeding Tube Awareness Foundation. After a very stressful week last week, I was SO ready for a vacation all by myself! It started off on a great note too. The plane was teeny but there was nobody in the seat next to me so I got to stretch my legs out as much as I wanted.

I was more productive during my hour long plane ride than I've been in any other one hour period in recent history because the only interruption I had was the flight attendant bringing me a beverage. I welcome that kind of interruption. I got several lists made and just got to take some deep breaths and let go of the stress from the week.

This is the 4th medical conference I've attended for the purpose of promoting the Feeding Tube Awareness Foundation and I am hooked. I absolutely LOVE the work we are doing! I also like it when I get my name badges and they say thing…

FTA Week 2015: I ♥ a Tubie!

We ♥ our tubie!

FTA Week 2015: Feeding Tube Fun

Today's theme is "Feeding Tube Fun". I think sometimes that's a bit of an oxymoron but we have sure had a lot of funny moments in the last 5 years with tube feeding.

One of my favorite stories was the time we went out to eat to celebrate one of the older kids' birthdays. We went through the usual, "No, we don't need to order anything for her, she doesn't know how to eat yet." conversation, and then Raya started to get impatient. She had been a little testy this evening due to the runny nose that hit her today and got a little upset that I wouldn't just hand my glass of water over to her. In order to keep her happy until our food came and we could give her a french fry to stuff in her mouth, I gave her a 60 ml syringe with a little bit of water in it. She's pretty good at drinking out of it but we had to work to keep her from accidentally unloading it all over everybody around us.
She'd been playing with it for a few minutes …

FTA Week 2015: Celebrate Success!

success: (noun) suc cess: the correct or desired result of an attempt

Measurement of success is subjective. One person's idea of success may be completely different than another's. In regards to feeding Raya, my idea of success has changed over time. Early on in our journey, I thought that success meant getting Raya off of the feeding tube. There are people and organizations that operate under this sweeping generalization, but there is so much more to "success" than just getting off of the tube as quickly as possible.

When you are on the outside looking in, it can be very difficult to understand what the journey is like. While I was training to run a marathon a few years ago, I had conversations with several people who had run marathons before. They told me stories about their experiences in training and running the actual race and I had an image in my mind of what those things may have looked like. In a small way, I could relate to their experiences because I was ru…

Tube Feeding: Debunking the Myths

Today's Feeding Tube Awareness Week topic is:
Today, we focus on correcting the myths about tube feeding. It is an opportunity to share the "truth about tube feeding." Tell us what you wish people understood about tube feeding. Share on your social media pages and blogs about what people need to know, and then please link your blog in the comments to this post. 

There is a lot of misinformation floating around about tube feeding. When I hear some of the things that have been said to other parents, I feel really lucky. Most of the things that I've heard that have hurt my feelings or made me sad have been more the result of someone saying something or asking something out of not being aware or understanding tube feeding, and it hurt because of the place I was at mentally and emotionally at the time and not so much because of anyone deliberately trying to hurt my feelings or be cruel.

Here are some of the common misconceptions about tube feeding:
Feeding tubes are an e…

Kicking off Feeding Tube Awareness Week 2015!

I feel like I say this every year but Feeding Tube Awareness Week really caught me off guard this year. It has a way of sneaking up on me! Last year we had just gotten out of the hospital with Raya and were getting ready to have a baby during FTAW, and this year I'm getting ready to go to another conference to represent the Feeding Tube Awareness Foundation and my baby is turning 1 this week. {why does babyhood have to go by so stinking fast?!?!}

You know what else caught me off guard? Having a baby that needed a feeding tube! That came out of nowhere, or at least I felt like it came out of nowhere. Raya was born full-term at a weight and length similar to her 3 older siblings. Things weren't perfect with her from the beginning, but nothing seemed to be terribly wrong either. She started out similar to her older sisters with the spitting up, lack of enthusiasm about nursing, and fussiness. Then she was vomiting. Not just spitting up, but full on, gagging, retching, heaving, V…