What's next: Following up after Tulla's scope

I left you with the results of the triple scope and the start of a feeding plan. Progress with Tulla doesn't look like a neat before-and-after. It's baby steps, lots of waiting, and trusting your instincts when answers aren't coming fast enough.

Our first baby step was a spoon dipped in my milk. Tulla is smart as can be, so it was no surprise that she quickly understood opening her mouth for a "bite." She was sitting tall and proud, happy to be learning. A week later, I gave the speech pathologist the update on her progress.

I asked if the developed skills were enough for me to start trying the thinned-out puree. Well, the pathologist was slow to respond, and I knew we only had a week before the next swallow study, so I decided to make the executive decision to try it. I wanted to make sure Tulla had the best chance at passing that swallow study. She needed the practice, and I'm a firm believer of trusting your instincts. Mama knows best.

Team Tulla traveled the three and a half hours back to the children's hospital a few weeks after the scope to meet with the aerodigestive team again. We went the night before to stay at the Ronald McDonald house. I have seen it advertised everywhere, but I didn't really appreciate just how much they support families with medical needs until I had to use it myself. I don't know what I would have done without their resources.

We had the swallow study first thing in the morning. This time, instead of laying on a table, she got to sit in a high chair. It's crazy to think about how quickly babies grow. We tested thin liquids, "nectar" thickness (the thin puree consistency we had practiced with before), and "honey" (regular puree) thickness. We also tried a bottle, but it has been so long since she's taken one that she had no idea what to do with it.

The results were not perfect, but they were promising. Tulla still aspirates on thin liquids and "honey" thick liquids. It was no longer sneaking through by her vocal cords, so the filler they put in did its job. Her issues seem to now be a timing issue. The flap that protects your airway when you swallow doesn't move at the same time as her other muscles. Not everything is firing in sync. However, she didn't aspirate on the thinned, "nectar" thick liquid, which was extremely encouraging.

I guess everyone aspirates a bit. The question is how much is it? How much can she tolerate? She doesn't clear things well with that smaller bronchus tube to her left lung, so we'll have to watch it closely.

We met with all the specialists who were part of the initial scope to really dive into the results and come up with a plan. Her oxygen levels have been much better since completing a round of antibiotics (hallelujah!), so we're planning on weaning her off of that at night. It also means that it was necessary because of an infection in her lungs. Two hours later, we had a plan. Here's the summary:

• If she gets sick, we have to do a nebulizer treatment twice a day to help break up the congestion.

  
  

• If she doesn't get better after a week, we have to assume it's bronchitis and treat it with antibiotics.

  
  

• We can start more feeding practice three times a day. If she starts to sound worse, but isn't sick, she's aspirating too much. Then she risks developing pneumonia.

We're cautiously moving forward, monitoring Tulla closely and celebrating the progress she's made. Since our progress will be slow, her NG tube is coming out and will be replaced with a G-tube (directly into her stomach), so she can practice swallowing without the hindrance of a tube down her throat. Her oxygen has already improved after antibiotics, and we’re grateful to be talking about weaning support instead of adding more.

As always, nothing is perfectly straightforward—but our visit gave us a clearer direction, and we’ll take that. As always, we'll see what tomorrow brings.