I have nothing left to give
I laid awake at 3am scrolling through my phone when I came across a blog post that opened my eyes. It made me realize I can’t live like this anymore. Continue reading “Medical-Mom Burnout”
Blog
How to Prime Tube Feeding Bag
Priming the bag for use in an Infinity® pump
When preparing for a tube feed, one of the first steps is to do something called “priming the line” or “priming the bag”. What this refers to is filling the tubing of the feed bag with the liquid nutrition that is going to be fed. This way there isn’t air being introduced into the patients GI tract. But did you know there is more than one way to prime the bag? Some of them are faster than others. Continue reading “How to Prime Tube Feeding Bag”
Nighttime Routine
Bedtime with feeding tubes and injections
Our daughter Maddison has never been one where we could just put her in a fresh pair of pyjamas and a clean diaper and lay her down to sleep. Because of Maddison’s disabilities, her nighttime routine is a little more complex. Getting her ready for bedtime includes some unusual steps; which includes a feeding tube and an injection. We recorded a video for our YouTube channel showcasing our nighttime routine for putting Maddison to bed.
I’ve put a link to the video in this post.
Graduating from the G/J tube
Graduation from Maddison’s G-J-tube to a G-tube
It’s been a long road to get where we are. Even the conversation around changing Maddison’s feeding tube from a g/j to a g-tube felt like only a dream just a few months ago. Yet here we are, the day finally came. March 9th 2019 marks the day we said goodbye to Maddison’s g/j feeding tube, and hello to the new g-tube.
*Video of tube change included* Continue reading “Graduating from the G/J tube”
Feeding Update: Feeding Into The Stomach
Trialing a transition from J-tube feeding to G-tube feeding (Feeding Into The Stomach)
I’ll start with a little feeding history of our daughter Maddison:
Maddison has been tube fed her entire life. It all started with what I shared in her birth story – that when she was born we knew something wasn’t quite right. We discovered in our NICU stay that Maddison had a bulbar dysfunction and lacked the ability to suck and swallow. Continue reading “Feeding Update: Feeding Into The Stomach”
Maddison’s Exercise Routine
Hypotonia exercises to help meet developmental milestones
Doing therapy with Maddison is a daily occurrence. Sometimes it’s structured, sometimes it through play. But we know that Maddison needs it, so we keep it up! The only way to build muscles is to work them! Continue reading “Maddison’s Exercise Routine”
A Day at the Hospital
12-hr hospital trip and answers
On November 13, 2018 we had 3 appointments out at BC Children’s Hospital for Maddison. We were doing the 2-hour drive in on a beautiful sunny day from Chilliwack to Vancouver, BC. There was a lot of anticipation for the appointments ahead, and apparently a lot of nerves as well. A Day at the Hospital. Continue reading “A Day at the Hospital”
We’re on YouTube!
Meet a Family of Ohs
On October 26, 2018, we took the plunge and launched our family’s YouTube channel! We’ve been sharing our life on our blog here, as well as our social media channels through Facebook and Instagram. But we’ve been wanting to be able to reach a larger audience – and hopefully impact more people – so we made our first YouTube video. Continue reading “We’re on YouTube!”
Camping trip 2018
Our greatest adventure yet: camping with our Tubie
There is no doubt that I was extremely wary about taking Maddison along for our first camping trip. You see, a toddler who is fed through a feeding tube, and camping, aren’t really two things that go hand-in-hand.
But we don’t want Maddison’s medical conditions to give us an illusion that she is limited when she actually isn’t. Continue reading “Camping trip 2018”
Tummy Tunnels
Iron on patches for feeding tubes
Unfortunately, when it comes to finding clothes for a baby with a feeding tube, it’s not one-size fits all. Thankfully I was introduced to Tummy Tunnels™ shortly after Maddison had her g-tube placed. The iron-on patches allow for easy adaption to most clothing to accommodate access for the feeding tube.
Continue reading “Tummy Tunnels”