Tulla's camp adventure

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 something extremely special to my husband and his family. They've been going up to this little place out in the middle of nowhere for almost 30 years! I started tagging along over a decade ago. It holds such a special place in their hearts. It's off the beaten trail, and past the building called "The last place on earth," so it's not my idea of a vacation per se. But I love how it makes my family light up. I love how my boys flourish away from technology and their normal chaos.

It was after 10 am the day I started writing for this post, and my youngest two were still asleep. It was the busiest week of camp ever. My older boys were off making camp friends and playing hard, competing in camp games, and exploring the same creek their father grew up playing in.

I'm prepared for the lack of sleep and abundance of dirt. All my boys came up as babies. This was my first year up there with a non-nursing baby who is dependent on me for her food. It was also my first big trip with a medically complex baby.

We stayed at a place over an hour from the nearest town, so I had to prepare for every possibility for Tulla health-wise. Even though her levels have been good, I had to bring the oxygen, pulse ox, feeding pump supplies, G-tube supplies, medicines, the back-up replacement button in case hers fell out, extra bags and syringes (in case some were defective). Then there were the "just in case" supplies like the nebulizer and air purifiers for the cabin in case the air quality got bad... You get the idea. I had to call and see where the nearest hospital was that could help us if her G-tube button came out for some reason.

Then there were the normal things you'd pack for a family with young kids, like clothes, backup clothes, diapers, toiletries etc. Suffice it to say, our van was packed. Even with taking all week to prepare, I still didn't have enough diapers for all the blow-outs. We still ended up in town to pick up antibiotics. It just goes to show, I'll never have it all together. But that's okay, we make it work!

Two days into our trip, after five days of oral steroids, Tulla's breathing still hadn't improved. I didn't find this very surprising, considering she already takes a steroid inhaler twice a day that had no impact on the way she sounded. I'm so thankful for technology, though. I was able to update her pulmonologist on her lack of progress, and she was finally willing to get Tulla on some antibiotics! Hence, the trip into town to the local pharmacy. The medication is giving her horrible diapers. She went through four in an hour! I pack extras, but not enough to manage that!

I'm hopeful the antibiotics will be more effective and make dealing with that cleanup worthwhile. Hearing her breathing loudly triggers a lot of anxiety for me. Even though she sounds like she's struggling, her oxygen levels are stable so far.

No matter what my anxiety levels are, Tulla never acts sick. She always has a smile on her face. I have never met a more joyful baby. She loved every minute of meeting new people, watching her brothers play, and especially time on the beach. Oh my goodness, does this kiddo love sand! She would sit and run her fingers through it with such wonder, picking out sticks and rocks as she explored. That was really special to see.

She also discovered that she wants to try real food. The girl has a sweet tooth and tried a taste of my ice cream. I figure it's about the same consistency as a thinned puree, right? She also lunged for a handful of frosting off my plate when I left my dessert too close to her at dinner one night! We had a good laugh as I tried to keep her from getting it everywhere. Her hand-eye coordination has definitely improved.

I wasn't prepared for the ways Tulla's care impacts me. I know her days are crazy, and it takes a lot of time and energy to manage everything. Taking that routine and moving it to a new environment really provides a new perspective. When there are activities to plan and attend, you can't just sit at home and run the pump. You have to prepare the bag, the extension, the syringes, the medications, and move everything with you. Otherwise, you miss out.

Camp is filled with so many beautiful people. There are so many generations of families that all come together. I love sitting and talking with people, hearing their stories, and sharing the experience with them. But I had to pump to provide food for Tulla, and my supply has been struggling lately.

So I spent more time sitting at the cabin than normal. I had to keep all the equipment clean and ready. That meant more stops to wash bottles and things. When I could, I fed her at the cabin so I didn't have to use the feeding backpack. I'm working on getting a new one, because the one I have is not super user-friendly. I had to feed her on the go a lot, which meant wearing her and the feeding backpack. The stroller didn't work for her with the uneven terrain around camp.

Tulla and I spent a lot of quality time together, which was sweet. If I'm being honest and vulnerable, it was also kind of lonely at times. I struggled knowing my boys were all off playing, other people were socializing, and I was sitting back. It took me a few days to realize that it was making me a little sad. God heard my heart, though.

We have friends up there in a similar life stage. They grew up with my husband and adopted me as their friend from the first time we met. The next day, after realizing I was feeling a little isolated, the mother and her one-year-old came and sat on the porch with us during Tulla's feed. She found her way to us a few times over the next few days. Her sitting with me meant more than she probably knew.

All in all, it was a good week. As I reflect on it all, I'm glad we went. For Tulla and I, things looked a little different compared to what I'm used to, but different isn't bad. She got to discover her love of sand. I got time for reflection and personal growth. I learned a bit more about myself and gained experience caring for Tulla on the go.

Whether we're at home or away on an adventure, I'm confident in our ability to make the most of any situation.

Stay tuned for an update later this week after we meet with her GI team and have her first button change!