Making Life a Little Simpler

I have to drag an IV pole all over my house when Tulla needs to eat. It can be such a pain, and I hate having it next to the bed at night. The other week, I took a piece of cardboard and designed a stand for Tulla's feeding equipment to keep on a nightstand instead. I added a shelf for her pump, pulse-ox, and a place to hold a bottle, syringes, or whatever else I needed close at night. I took it over to my neighbor, who does woodwork, and asked if it was something he could build.

He didn't hesitate or ask questions. He knew it would help me out, and he was happy to make it. It makes me feel so incredibly lucky to have a neighbor with such talent and a generous heart. A few days later, it was done!

It was exactly what I asked for. He asked me what it was for, and I realized I hadn't really explained it well. He had no idea what he had built or how much it meant to us. What a blessing to have such kind-hearted people in our lives.

Of course, I explained it better and sent him pictures once I had it painted and set up. I had to stick with our butterfly theme! I think it turned out pretty cool, don't you?

Life is inevitably complicated, but I'm always on the hunt for ways to make it a little simpler. Right now, my life revolves around feeding Tulla every three hours while still trying to keep up with my boys. I don't want her situation to keep her or any of our family from new experiences.

My other big struggle with caring for a child with a tube is feeding on the go. Tulla received a backpack-style bag for her pump and feeding bag, but it isn't designed well and often gives me error messages. It also doesn't have any storage space. The pump and feed bag are really all that fit.

She's also still a baby, which means she needs a diaper bag. This means that when we go out, we need a bag for all her normal baby needs, a place for her syringes, food, and medications, as well as her feeding backpack.

That's a lot to lug around. I needed one bag that can be her diaper bag and feed bag. There are a few adaptive backpacks that you can order online. Some that are small enough for your kiddo to wear themselves, but that's not what a baby needs. There are a few backpacks with storage, but I found them too small to fit everything I needed.

I found a few groups online that modify regular backpacks to fit adaptive needs. They were reasonably priced, and built by mamas who get it. However, I also have a mom who is crafty and handy!

I was explaining how the backpacks get modified to fit the tubing through grommets, and how the pump and bag get attached. Here were my main requirements and problems with the ones I tried:

• The bag was too close to the pump (The Kangaroo is picky about the feed bag line going to the pump being straight).

• I needed better access to the pump to start/reset/end feeds.

• A separated storage space for the feed bag.

• The line going from the pump to Tulla needed to not get crushed inside the backpack.

Well, Tulla's grandma is a problem solver. She is the kind of person who will give of her time and talents if she thinks it will help you out. So we went shopping. Back to school is the perfect season to shop for backpack styles.

We considered an all clear backpack, because that solved the accessibility problem. I would be able to press the buttons through the vinyl.

Then we saw it. The perfect backpack! It was purple. It had butterflies. It was adorable! It had an insulated lunchbox that clipped to the front, which became the part that holds the pump. There was a divider inside, which was the perfect place for the milk bag.

The line, though. That remained the challenge. How would we keep it from getting crushed or pinched? It was grandma to the rescue again, with the brilliant idea of a telescoping pole of some sort to keep the feed bag higher than the backpack. We landed on a hand-held flagpole, which she secured in the backpack. It's hard to describe, so I'll just add a picture for you to appreciate!

There are two shower grommets - one at the back of the lunchbox where the tubing is fed from the feed bag to the pump, and back out to Tulla. The second grommet is on the back of the backpack, and that's where the pole comes out to keep the feed bag high.

There's a ring on the front where I keep her wrench and medical alert NFC tag.

There are side pockets where I keep her syringes for easy access.

The backpack has plenty of room for everything else we need.

(If there is anyone who would like a bag like this, I can create a separate post with a tutorial and links. It looks impressive, but the changes are beginner-friendly. Let me know in the comments!)

These are a few of the projects we've been working on lately that have made the daily task of feeding a little simpler. I'm so thankful for the people who come alongside us and help with this. Nothing about this journey is easy. It makes every day a little easier to manage. Knowing our little Tulla is getting the fullest life we can give her, and seeing her joyful smile makes it all worth it.