Blogging our life with a special needs child
Fed is best, and some babies are tube fed! Maddison has always been fed through a tube. Though it comes with many obstacles, tube feeding can also be a blessing.
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.
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”
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”
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”
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”
For Maddison’s first birthday my wonderful friends gifted our family with a one-hour photo session with Rebecca Bennett Photography. I knew from the very beginning that we would not be hiding Maddison’s feeding tube. Maddison’s feeding tube is an extension of her body, and as much as Maddison is accepted, so is her feeding tube. Continue reading “Family Photos 2018”
Feeding tubes that are used for continuous feeds can get super gross with one day of use. When we switched Maddison to j-tube feeding (into the jejunum, or small intestine) we noticed that her feeding tube extension would get a ton of formula build up. I’ve found a safe and very effective way for cleaning feeding tube extensions using household items. Continue reading “How To: Cleaning Feeding Tube Extensions”
There are a lot of supplies involved when your child is tube fed. Your home may be over run with all the syringes, tubes, and don’t forget the boxes and bags that the tube feeding supplies come in. And it’s not just feeding tubes, it can include other medical equipment (trach, suction machine, pulse oximeter, etc.), whatever you may get from your medical supply company. But if you have a organize system in place for when your order come in, it will make things flow a lot smoother. Continue reading “How To: Organize Tube Feeding Supplies”
I have a strong belief that fed is always better than not. But I also believe that nutrition that comes directly from nature is preferred. I have been very blessed that my body produced milk for both of my children, but Maddison has almost always needed to be supplemented with formula feeding, and I’ve never been bothered by it.
People ask us all the time, “How long will Maddison need her feeding tube?” And I’m sure if you ask any other parent of a tube-fed baby they will say that it is the most common question they get asked too, along with “Why do they have it?” It really is the hardest question to answer, because there isn’t a straight forward answer. Continue reading ““How long will she have the feeding tube for?””