Adventures, Appointments, and Tulla's First Birthday!

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.

It was a bit difficult to manage her feeds on the go. For the future, I need a clip to hang the backpack from her stroller so that I don't have to wear it the whole time. I think we covered 15 miles total as we walked around. That's a lot of walking to carry her supplies on my back, but luckily, I had reinforcements with her auntie and grandma to take turns carrying things.

If you have to travel with a medically complex child, I highly recommend bringing extra hands if you can! Someone to help wash out feeding supplies while you give her medicine, or change their diaper while you get the bedtime routine set up. Someone to distract her while she's connected to her feeding equipment and eating so that you can run to the bathroom without worrying about her pulling her tube out. I'm forever grateful for the family that makes sure we're included and takes care of us.

It was such a fun trip, and a nice little break from our normal routine. We've never taken so many pictures or had so many adventures in a row. Each day was filled with new challenges and memories. The hardest part was being away from her daddy and brothers. Even though we had fun, we were very excited to come home and be reunited with the rest of our family.

GI appointment and a new dietician

We jumped right into doctor's appointments when we got back. First, we had GI. This was when I was supposed to perform her first button change. I didn't think much would happen at the appointment since I had already changed it. Tulla charmed all the nurses and doctors as always. I got to explain what had happened, and the doctor examined her site. They were impressed with how clean it was, which made me proud.

What I wasn't expecting was the changes to her feeding schedule. I knew a dietician would be part of the visit, but I assumed they would have to defer to the aerodigestive team, and no changes would be made until her December appointment with them. Tulla is a year old now. Apparently, that means a world of new food possibilities opens up.

She can now have blended foods through her tube. This means higher calorie food in less volume. The most exciting part about this is that she will only need six feeds every day instead of seven, which means the overnight feed will become a thing of the past! I might actually get some sleep. It is also a heavier food, so her reflux might improve. She's on a high dose of reflux medication, but she's still so uncomfortable, especially when she eats.

Milk is thin, so it's easy for it to be spit up. With a thicker, heavier food, theoretically it will stay down better. This will make her much more comfortable. I can't wait for the possibility that her reflux might finally improve. Tulla rarely complains, and she's always smiling. It doesn't seem fair that she has to go through all this.

A one year old

It will be a great birthday gift to our sweet little one. She is officially a year old! How crazy is that? I look back at this past year and all the things we have learned about her. She loves people, animals, bubbles, stuffies, and music. She waves and plays peek-a-boo. The way she's grown and changed this year is amazing to be a part of.

Then I look at all the medical things I now know about. I've learned about aspiration, NG tubes, G-tubes, reflux, and other complex medical conditions. There's a whole world of medical suppliers and specialist teams that I would never have known about otherwise. I'm so thankful that we live in a day and age where we have access to these things that keep us out of the hospital.

Our team says this winter will be very telling for Tulla. How she handles illness this cold and flu season will inform what her care will look like going forward. Will she outgrow things, or will she need surgery to help her body function? These are the things we anticipate looking forward into the new year.

Speech therapy

One appointment a week isn't enough for miss Tulla, so we also had our second speech therapy appointment. You haven't heard about the assessment yet, so I suppose I had better rewind and fill you in on that, too. I was super optimistic that we would get another swallow study after her assessment. The speech therapist agreed that it would make the most sense to see where she's at since she has had so many months of safe swallows. Our plan for her oral feeding would be based on that.

We just had to wait for approval from the speech pathologist to do the study again, because our speech therapist defers to her expertise.

The instructions I was given back in June was to practice eating two to three times a day on thinned purees, since we knew that was safe. I have tried to practice at least twice a day since then. It's hard with all the other things going on to incorporate it in our schedule.

Now, the pathologist is saying we need to practice the full three times a day and experiment with thicknesses, trying yogurt bites in silicone feeders, sampling water, and regular purees too. This was such a change from the slow and safe pace that I thought I was supposed to be following.

 I was not thrilled to learn that the pathologist didn't want to pursue the swallow study yet. This contradicting information is preventing me from knowing how Tulla is doing, if she's aspirating, or if she's making progress towards being able to eat more by mouth.

This is super frustrating.

At the speech therapy appointment this week, I was ready to give the therapist a piece of my mind. Why was the instruction changing, and why was this the first I was hearing about it so many months later? How can we get anywhere when the plan keeps changing? Tulla's therapist is super sweet. I actually like her a lot, but at the end of the day, I am still a mama bear fighting for my baby.

Her speech therapist agreed that the original instructions were somewhat confusing. She added some clarification on how to approach these changes to the textures we're introducing to Tulla. Not changing to a fully different consistency, but making gradual changes to the thickness for a few bites in each of the five minute sessions.

Struggling with noisy breathing still

What I wasn't expecting from this appointment was the concern over the way Tulla sounds again. Her speech therapist was concerned that the noisy breathing she was hearing may be related to the feeding practice.

After three weeks of antibiotics, we had hoped Tulla would finally be healthy for a while. This is the third round in the past six months. I had noticed a few days before that she was sounding noisy again, though I don't think it's related to the feeding practice, because she always sounds this way regardless of how often we practice.

Still, it was recommended that I reach back out to the pulmonology team since they're the ones managing her antibiotics and that part of her care. Not exactly what I wanted to hear. I was really hoping for a break from the extra medications.

We're starting over with her sickness plan. Duoneb every 4 hours with clapping therapy. Hopefully that can move whatever is causing the noisy breathing out of her lungs without needing more antibiotics.

I got a message yesterday saying that we should cut back to just the thinned purees that we know are safe for her until we know what's causing the noisiness. We just can't seem to get anywhere. Any time I think we're making progress, we end up back in the cycle.

We don't know what's causing Tulla's noisy breathing. Is it illness caused by her narrow bronchus or other internal structures? Is it that she's aspirating and that eating by mouth isn't safe? These are the questions we keep coming back to. I'm not sure if we're truly any closer to real answers.

There are so many facets to her care. We're in a much better place than we were last year. There's a whole team behind her making sure she is getting the care she needs. We're changing things up with her food, which might help with her reflux. It's been a year of adventures and learning for everyone. This journey is far from over, but we'll keep fighting for what's best for Tulla every step of the way.