Why I started this blog Team Tulla, as a blog, started with the desire to answer the question "How is she doing?" So often, that's one of the first things people ask when they see me. I never know exactly how to answer. It's so hard to balance what's too much information with what's necessary to explain where she's at. Her journey is so nuanced, and that inspired me to start this blog. This blog has also given me an amazing space to help articulate my own thoughts and share t

One week after Tulla was born, we had a moment that changed everything: she stopped breathing and turned blue in my arms. In this post, I share what happened and how we ended up in the children’s hospital for a week of tests and unknowns. If you’ve walked a similar road, please read this at your own pace and take breaks if you need to. One week after Tulla was born, we were sitting in the living room on a quiet afternoon, enjoying what I thought was the start of us finding ou

My heart broke a little yesterday. Tulla cried. That in itself is a sentence that is hard for me to write, because she's always such a happy little girl. Yesterday, she wanted to eat solids, and I couldn't let her. She's too young to know what's going on or understand why her feeding plan has changed. I want so badly for her to be able to eat by mouth like other little ones her age. But right now, it's just not safe. Tulla doesn't understand how just last week she was excited

We have had a busy couple of weeks. Tulla and I went on her first road trip, we've gone to a bunch of doctor appointments, and she had a birthday, too! Girls Trip! To celebrate her auntie's graduation from college, Tulla got to go on a road trip with us. It was her first time riding the train into a big city. We got to explore museums and go shopping too. She absolutely loved the chaos of being around so many people. There were so many people to wave at and things to look at.

Panic and adrenaline. That feeling when your hands won't stop shaking and you think you're going to throw up. Your mind races a thousand miles a minute and you struggle to focus. That was my day. I was out shopping with all the kids. We had just finished at the pharmacy and went across the street to pick up groceries. The trip lasted less than five minutes, but Tulla was NOT happy. She was crying, and I knew something had to be up. Luckily, her feed was done, so the backpack

We have not had a health update here in a hot minute. The problem is that when Tulla is going through something, and I'm not sure what it is, or what it might lead to, I tend to shut down and not know how to write about it. I don't want to prematurely update people when I don't really know what's going on myself. There's so much that Tulla has to deal with on a daily basis. I'll rewind a bit here and walk you through the past few weeks. Tulla's reflux has always been problema

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

Tulla has had a pretty quiet week. We're still talking with her doctors about adjusting her reflux medication because she seems to be more uncomfortable with her feeds lately. Other than that, we haven't had many changes to report. I've been reading a lot about mental load. It refers to the things that rattle around in your brain and take up your emotional and mental energy. As a mom, I see it as the things you think about but nobody sees. Things like laundry, meal planning,

Tulla is truly one of the happiest, most joyful babies I know. People comment on her smile everywhere we go. If I had experienced half of what she's been through, I don't know if I could still have that big of a smile. She is a wonder. Because of her cheery disposition, when she gets upset without a visible cause, my anxiety goes way up. My adrenaline is high, and my fight or flight is on full alert. I know babies fuss, obviously. They get upset. There are plenty of explanati

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

Has it been another week already? Crazy how time flies when you've got four kids running you ragged and tons of wacky weather. All week, I was listening to Tulla's breathing. I gave her an inhaler every four hours while she was awake, and the steroid inhaler twice a day on top of that, hoping that it would help her sound better... But of course, she doesn't sound better. My stress level still goes up, because this is what she used to sound like before we knew it was bronchiti

Do you ever have those days when your mind races a thousand miles an hour when you weigh all the variables that could impact the outcomes? That's where I'm at. And it's exhausting. I've started this post a couple times... but it hasn't seemed quite right. Up until now, I've written about past experiences. This is the first time I've made a post in real time, which makes it hard to know what to say and organize my thoughts. Poor Tulla is teething like crazy, so she's a drooly

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've found that having a child with higher medical needs opens up a community that I hadn't been a part of before. It's not that I didn't know that families deal with medical challenges, but it's not something I had experienced before. When Tulla was born, I tried to act like everything was fine. I didn't really talk about my experience or her medical concerns. Partially because I didn't know it wasn't a one-time thing, and partially because I didn't want to acknowledge anyth

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

This post contains affiliate links that do earn me a small percentage in commission if you purchase the items from the link. Anything I make goes directly towards Tulla's medical-related expenses. Have you ever been in a situation where you've had to grab a bag and run? I like to think about myself as a fairly prepared person, but I certainly hadn't ever imagined I'd need to. That's the way it goes though, right? You don't think about these things until you're in that situati

This week we've been working on our feeding schedule and the logistics of having a "tubie" (child with a feeding tube). There's not a lot of new things to report, so I thought I'd switch things up for today's post and share a devotional I've been working on. I'm going to dissect my favorite verse because it reminds me that regardless of my situation in life, God has a plan and the strength I don't. We all deal with our own challenges. I know I'm in a season of trials, so it f

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