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 bu

I swear that yesterday was Tuesday, I blinked, and it's Saturday night. Last weekend, we caught up on the camp laundry on Saturday, celebrated my wonderful husband's and sweet grandma's birthdays on Sunday, and planned on leaving Monday once my hubby finished work. I teased late last week about updating you on Tulla's first G-tube button change, so I wanted to get it written before the end of the week! I am not a fan of needles or anything that goes under the skin. It freaks

Hello, lovely people. It's been two weeks, and I owe you an update. Last post, I wrote about Tulla and some noisy breathing she was struggling with. The pulmonologist said she thought the X-ray looked viral (how can you tell that from an X-ray? Not sure, but that's why they make the big bucks I guess), so she didn't want to start an antibiotic right away. She started a liquid steroid treatment instead, and I got ready to take the whole crew up to camp. Family camp is somethin

Today I boxed up Tulla's bottles. Wow, it brought up a lot of emotions. I never wanted to use them in the first place. I had every intention of nursing her, just like I had with my past three babies. I considered myself a bit of an expert based on all my experience. I had dealt with the learning curve of my first child, I had to drop feed my second for a few weeks while he got the hang of latching, and the third went so smoothly that I was confident in my abilities. Nothing p

I'm not a medical professional. I'm just a mom who will do whatever it takes to keep my children safe and healthy. I want to start by saying always follow your child's care team's instructions over anything you read online - this is just what I've learned. I've learned a lot about medical equipment this year. If you're following along with Tulla, or just curious for yourself, here's some FAQ-style information. What is a G-tube? A gastrostomy tube (G-tube for short) is a small

We are home again! I can breathe a sigh of relief and once again rearrange our days to accommodate our new normal. More on that in a minute. I'm sure you want the details from our stay first. Can I start with a confession? I cannot leave my house without forgetting something. Regardless of how intentionally I prepare or how many lists I write, there is always something. This time it was my nice wearable pump. I didn't realize until I was well on my way. Luckily, this isn't my

Right now, my heart is pounding out of my chest. Right now, my breath is rapid and shallow. The procedure has been described to me as straightforward with minimal risk. Tulla is still going back without me and under sedation. I'll still be in the waiting room alone. So I'm trying to calm my nerves, because she doesn't need to feel that kind of nervous energy. She doesn't understand what's going on, or what's about to happen. That makes me feel guilty all over again. Like when